19
6/6/2014 Epilepsy South Africa Newsletter June 2014 http://us7.campaign-archive2.com/?u=c0810bc6019da7e92ccfeea3a&id=7019973d8e&e=[UNIQID] 1/19 Table of Contents From the Desk of the National Director Towards a New NPO Act ICASA Code for People with Disabilities SADPD Changes Its Name The South African Cabinet National Mental Health Policy Frameword & Strategic Plan 2013-2020 New Draft National Disability Policy Changes Focus South African NCD Strategic Plan 2013-2017 Northern Cape Scoops Local Media Award INTERNATIONAL NEWS New IBE Members New York State Considering SUDEP Legislation FACTS CORNER US Congress Urging HHS to Remove Barriers to Marijuana Research New Epilepsy Publication WHAT'S HAPPENING? National Epilepsy Week 2014 31st International Epilepsy Congress Research Survey CONTACT US

Table of Contents - Epilepsy newsletter... · 077 4408 and E-mail: [email protected] SADPD Changes Its Name Mr Kudakwashe (AK) Dube, Chief Executive Officer of the Secretariat

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Page 1: Table of Contents - Epilepsy newsletter... · 077 4408 and E-mail: lduplessis@icasa.org.za SADPD Changes Its Name Mr Kudakwashe (AK) Dube, Chief Executive Officer of the Secretariat

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 119

Table of Contents

From the Desk of the National Director

Towards a New NPO Act

ICASA Code for People with Disabilities

SADPD Changes Its Name

The South African Cabinet

National Mental Health Policy Frameword amp Strategic Plan 2013-2020

New Draft National Disability Policy Changes Focus

South African NCD Strategic Plan 2013-2017

Northern Cape Scoops Local Media Award

INTERNATIONAL NEWS

New IBE Members

New York State Considering SUDEP Legislation

FACTS CORNER

US Congress Urging HHS to Remove Barriers to Marijuana Research

New Epilepsy Publication

WHATS HAPPENING

National Epilepsy Week 2014

31st International Epilepsy Congress

Research Survey

CONTACT US

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 219

From the Desk of the National Director

Dear Readers

May was a month filled with highlights for Epilepsy South Africa Our Directors and

National Board met from 15 to 17 May 2014 to consider operational and policy issues

These national meetings only take place twice annually ndash usually in AprilMay and

September We look forward to the South CapeKaroo Branch hosting the September

2014 meetings in Knysna

Another highlight was the 2nd African Epilepsy Congress held in Cape Town from 21 to

24 May We welcomed visitors from across the African continent and even further afield

The presence of the leadership of both the IBE and ILAE was particularly significant

This included Athanasios Covannis (IBE President) Emilio Perucca (ILAE President) and

Ann Little (IBE CEO) as well as Anthony Zimba (IBE Vice-President for Africa) Youssouf

Noormamode (IBE Africa Chairperson) and Harmiena Riphagen (IBE Africa Secretary)

Our National Chairperson (Dr Phindi Mnguni) welcomed delegates to the Congress on

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 319

Wednesday evening She shared the platform with Master of Ceremonies Jo Wilmshurst

(a well-known paediatric neurologist at Red Cross Childrenrsquos Hospital) Dali Magazi

(National Chairperson of the Epilepsy Association of South Africa) Anthony Zimba

(Congress Co-Chair) Amadou Gallo Diop (Congress Co-Chair) Athanasios Covanis

(IBE President) and Emilio Perucca (ILAE President)

The first two days of the Congress focused strongly on the medical aspects of epilepsy

while Saturday was set aside as the Epilepsy amp Society Day Presentations focused on

the psycho-social impact of epilepsy with South Africa strongly represented by Nicole

Laxton (Epilepsy SA Youth Ambassador) and her mother Danica who spoke about their

experiences as well as Anne Fredericks who focused on epilepsy and elderly persons

and Johanna Keikelama who presented a research study conducted in South Africa

about epilepsy and traditional healers They were supported by Gretchen Birbeck (USA)

speaking on womenrsquos issues Robert Cole (Australia) on menrsquos issues and Harmiena

Riphagen (Namibia) on epilepsy and schooling

The IBE has agreed to make copies of presentations and papers available on their

website in the near future

Following the recent national and provincial elections we are pleased that the newly

announced Cabinet includes one Minister and two Deputy Ministers with disabilities

We include information about the newly constituted Cabinet elsewhere in this newsletter

In addition President Zuma announced the reconfiguration of the Department of Women

Children and Persons with Disabilities At the time of writing the new administration is

working out the operational details In the interim it is business as usual

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 419

One of the major decisions taken during the National Board meeting is the relocation of

the National Office to the Western Cape Branch in Lansdowne Cape Town during June

2014 Updated information will be made available via our website and our next

newsletter

Kind Regards

Marina Clarke

Towards a New NPO Act

by Sophie Hobbs

In this article the author takes a quick look at the latest version of the Draft NPO Policy

Framework on the Amendments of the Non-profit Organisations Act and possible

implications for the sector

The fifth draft of the Draft NPO Policy Framework on the Amendments of the Non-profit

Organisations Act 71 of 1997 was issued to non-profit organisations (NPOs) ahead of a

consultative meeting in Johannesburg at the end of March 2014 The Non-profit

Organisations Directorate has clearly taken pains to address the concerns of civil society

with this version of the framework which recognises the valuable contribution and role of

NPOs in building South Africarsquos economy

The Framework proposes an NPO Directorate as a specialised direct public service that

is lsquoa focussed and fully ring-fenced entityrsquo but still reports to the responsible Minister (in

this case the Minister for Social Development) Amendments to the Act will aspire lsquoto

promote transparency and accountability within the NPO sector without placing onerous

requirements on organisationsrsquo The business case for changes to the structure of the

Directorate will be developed through a feasibility study although it is not clear whether

the study will be by internal or independent researchers

Recognition Value

This fifth version of the framework is more inclusive than previous versions recognising

the important role of civil society in the development of the country It explicitly makes

the point that NPOs are not only delivering social services but contributing to economic

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 519

growth and stability The framework says ldquoIt is not the aim of government to simply write

unreasonably stringent measures that will hamper the growth of the NPO sectorrdquo

One of the striking things about the framework is the acknowledgement of how little is

known about the real size employment conditions salaries and income levels of the NPO

sector in South Africa While the Directorate is able to cite a growth in registrations of

more than 11 percent per annum it acknowledges that the majority of registered

organisations are still non-compliant and that some 80 percent of registered

organisations are voluntary associations

One of the proposals in the framework is for the Directorate to conduct research on the

lsquoincome levels and contribution to the South African economyrsquo of NPOs and make this

available to the public This should be welcomed and encouraged ndash the more we

understand about the South African NPO sector the better we will be able to lobby for

and jointly create enabling policies and practices

Reducing the Burden

A key component of the framework is the recognition of the burden of multiple

registrations and compliance mechanisms on NPOs and particularly that smaller

organisations are often unable to meet the minimum requirements GreaterGood

welcomes the proposal to simplify the registration processes and the assertion that

Trusts Voluntary Associations and Non-profit Companies should be subjected to the

same registration and compliance requirements

We also welcome the move towards electronic registration and faster turnaround times

working with a network of partners offering registration services in areas where Internet

penetration is not as good However we would like to urge the Directorate to investigate

the use of cellphone and USSD solutions which have been very successful at connecting

isolated communities with services in similar economies like Kenya and Nigeria

Size Is Not Everything

Another proposal to be welcomed is the lsquorisk-based approach for monitoring compliancersquo

and the recognition that because of the diversity of the sector the current lsquoone size fits

allrsquo approach is not appropriate However we would caution against the assumption that

the size of an organisation is the key factor in the assessment of risk According to the

framework ldquoThe larger the size and the higher the income levels of the organisationhellip

the more vulnerable and at risk the organisations can berdquo Over the last 10 years that

GreaterGood and GreaterCapital has assessed organisations and conducted project risk

ratings we have found that size and income levels are not necessarily associated with

greater risk There are many factors at play and a solid evidence-based risk

assessment tool should be developed to address this

Self-Regulation

The proposals in this version of the framework cover the concept of self-regulation by

the sector in some detail This is a long way from the first few versions which created

anxiety in the sector in terms of enforcement The fifth version explicitly states ldquothe

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 619

intention is not to create a body that will continually interfere in the affairs of

organisationsrdquo While we welcome the softer approach GreaterGood does have

concerns about what evidence there is of the efficacy of self-regulation There are a

number of good governance initiatives in existence already and disagreement within the

sector about which is the most appropriate We believe there is a need for an

independent unified compliance framework based on accurate information about size

income and expenditure practices and salary benchmarks in the NPO sector

While self-regulation is given recognition in the framework an NPO Tribunal and appeal

mechanism is still proposed to provide a dispute resolution process outside of the costly

and time consuming court process While this could be of great benefit to the sector our

concern is the make-up of the tribunal and the perception of its impartiality

Furthermore we are not sure that the lsquoblacklistingrsquo of organisations (which is still

proposed) is useful While we of course acknowledge that fraud and mismanagement

must be exposed the potential for hasty unfair and prejudicial lsquoblacklistingsrsquo ndash outside of

a judicial process ndash means that the process would have to be very carefully detailed and

followed

GreaterGood and GreaterCapital welcomes the open and consultative nature of the

process for developing this framework and believes that by working collectively the

resultant changes to the NPO Act will be able to meet the needs of our growing and

changing sector

Sophie Hobbs is the head of strategic communication at GreaterGood and

GreaterCapital This article first appeared in the Greater Impact 8 April 2014

Source wwwngopulsecoza 24 April 2014

ICASA Code for People w ith Disabilities

The ICASA Code for People with Disabilities (currently under review) was circulated for

public comment The deadline for comment has come and gone and ICASA will be

holding public hearings in provinces in the coming months

KwaZulu-Natal 20 June

2014

Sandile Ndlovu 031-334-

Limpopo 26 June

Mavhungu Makatu 011-566-

3429

Western Cape 27 June

Xolile Mateza 021-431-

9804

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 719

9529 SNdlovuicasaorgza MMAkatuicasaorgza XMatezaicasaorgza

Eastern Cape 30 June

Mpho Moletsane 041-394-

1609

MMoletsaneicasaorgza

Mpumalanga 3 July

Mavhungu Makatu 011-566-

3429

MMAkatuicasaorgza

Northern Cape 3 July

Please liaise directly with the contact person in your province with regards venues time

and reasonable accommodation needs

For any other queries or to obtain details for other provinces please contact Lize du

Plessis Consumer Affairs Department Independent Communications Authority of South

Africa (ICASA) Bloemfontein Regional Office Phone (051) 411-5904 Cell phone 073

077 4408 and E-mail lduplessisicasaorgza

SADPD Changes Its Name

Mr Kudakwashe (AK) Dube Chief Executive Officer of the Secretariat of the African

Decade of Persons with Disability (SADPD) issued a press release that the name was

changed to Africa Disability Alliance (ADA) with effect from 11 April 2014 This completes

a few years of planning and consultations aimed at having a clearly defined name that is

short concise and not linked to any timeframe The new name can now be used in all

correspondence legal and other documents

The change was necessitated by the need to shorten the name de-link it from a lsquodecadersquo

timeframe There was a need to adopt a name that communicates the fact that the

organisation is an African broad-based regional technical agency that works through

alliances and networks using a broad range of tools that emanate from the UN AU and

other jurisdictions

ADA is led and managed by people with disabilities The General Assembly and Board

of ADA are comprised of diverse-disability membership of more than twelve continental

organisations and networks in Africa

It is important to note that

1 The registration number and original date of registration remain unchanged

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 819

2 ADA will continue to be a non-profit corporation (NPC) in line with the amended

Companies Act (2008)

3 ADArsquos logos addressesbranding business start date main and ancillary

objectives will reflect the new name but remain the same

The registration of ADA launches a new phase in the development and maturity of the

organisation

The South African Cabinet

Post Minister Deputy Minister(s)

Minister in the Presidency Jeff Radebe Kebby Maphatsoe

Minister of Women in the

PresidencySusan Shabangu

Finance Nhlanhla Nene Mcebisi Jonas

Water and Sanitation Nomvula Mokonyane Pam Tshwete

Communications Faith Muthambi Stella Ndabeni-Abrahams

International Relations and

CooperationMaite Nkoana-Mashabane

Noma-India Mfeketo

Lluwelyn Landers

Police Nkosinathi Nhleko Maggie Sotyu

Public Service and

AdministrationCollins Chabane Ayanda Dlodlo

Human Settlements Lindiwe Sisulu Zoe Kota-Hendricks

Economic Development Ebrahim Patel Madala Masuku

Trade and Industry Rob Davies Mzwandile Masina

Science and Technology Naledi Pandor

Home Affairs Malusi Gigaba Fatima Chohan

Higher Education and

TrainingBlade Nzimande Mduduzi Manana

Energy Tina Joemat-Pettersson Thembi Majola

Justice and Correctional

ServicesMichael Masutha

John Jeffery Thabang

Makwetla

Agriculture Forestry andSenzeni Zokwana Bheki Cele

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 919

Fisheries

Sport and Recreation Fikile Mbalula Gert Oosthuizen

Small Business Development Lindiwe Zulu Elizabeth Thabethe

Mineral Resources Ngoako Ramathlodi Godfrey Oliphant

Cooperative Governance and

Traditional AffairsPravin Gordhan Andries Nel Obed Bapela

Defence and Military

Veterans Nosiviwe Mapisa-Nqakula Kebby Maphatsoe

Environmental Affairs Edna Molewa Barbara Thomson

State Security David Mahlobo Ellen Molekane

Basic Education Angie Motshekga Enver Surty

Rural Development and Land

ReformGugile Nkwinti

Mcebisi Skwatsha Candith

Mashego-Dlamini

Telecommunications and

Postal ServicesSIyabonga Cwele Hlengiwe Mkhize

Transport Dipuo Peters Sindi Chikunga

Social Development Bathabile Dlamini Henrietta Bogopane-Zulu

Public Enterprises Lynne Brown Gratitude Magwanishe

Labour Mildred Oliphant Inkosi Patekile Holomisa

Arts and Culture Nathi Mthethwa Rejoice Mabudafhasi

Public Works Thulas Nxesi Jeremy Cronin

Tourism Derek Hanekom Thokozile Xasa

Health Aaron Motsoaledi Joe Phaahla

National Mental Health Policy Frameword amp Strategic Plan 2013-2020

The National Department of Health publish this document which they claim is a new

mental health system based on primary health care (PHC) principles Read the plan

here

Source SA NCD AlliancePHANGO Newsletter Vol 1 (5)

662014 Epilepsy South Africa Newsletter June 2014

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New Draft National Disability Policy Changes Focus

The first Draft White Paper relating to the revised National Disability Policy which

introduces the concept of ldquoduty bearersrdquo and charges them with responsibility for

ensuring the implementation of the provisions of the policy is expected to be signed off

by the incoming Minister of Women Children and People with Disabilities in June this

year

It will then be released for public comment following cabinet approval in August and

should hopefully be ready to be launched on 3 December National Day of People with

Disabilities

Thatrsquos according to Lidia Pretorius DWCPWDrsquos Chief Director Monitoring and

Evaluation of the Rights of Persons with Disability who said much of the focus of the new

policy was directed at ensuring the mainstreaming of persons with disabilities in all walks

of life including in the workforce

Speaking at the SAE4D breakfast last month Ms Pretorius said that duty bearers - those

who are in a position to make a difference from captains of industry to government

officials ndash will be deemed to have intentionally discriminated against persons with

disabilities (a criminal offence) if they are unable to provide evidence that they

Acknowledged that there are barriers which exclude persons with

disabilitiesdetract from their access or participation

Identified potential barriers

Put in place measures to minimiseremove barriers

Budgeted for these measures

Can report on progress with implementation

Can measure impact

ldquoWe are moving beyond begging and encouragementrdquo she said ldquoWe want results The

new policy is based on four key pillars Human Right Universal Access Design

Mainstreaming and Self-Representation Its purpose is to ensure equality for people

with disabilitiesrdquo

The new policy is designed to bring the National Disability Policy in line with the

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1119

Governmentrsquos Medium Term Strategic Framework 2014 ndash 2019 and to address the

shortcomings identified in the 2011 Draft Policy which did not fully make provision for its

integration into the government outcomes-based planning approach or the integration of

mainstreaming guidelines

ldquoDisabilityrdquo Ms Pretorius said ldquois not something a person has Disability is imposed by

society when a person with a long-term impairment is denied access to full participation

in all aspects of life and when society fails to uphold the rights and specific needs of

individuals with impairmentsrdquo

In terms of the new policy persons with disabilities will include all those who have long-

term physical psychosocial cognitive andor sensory impairments which in interaction

with various barriers may hinder their full and effective participation in society on an

equal basis with others SAE4D will be participating in consultations with the DWCPD

and monitoring the progress of the new Draft Policy and will keep members informed

about all new developments

Source South African Employers 4 Disability newsletter Issue 2 April 2014

South African NCD Strategic Plan 2013-2017

If you have not yet read the 4-year strategic plan for non-communicable diseases (NCD)

you can download it by clicking here

Source SA NCD AlliancePHANGO Newsletter Vol 1 (5)

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1219

Northern Cape Scoops Local Media Award

Radio Nfm in Namaqualand represented by guiding management member Brunhild

Strauss proudly walked away with top honours by being chosen as the Best Community

Radio Station in South Africa during the Local Media Awards in South Africa The

National Office of Epilepsy South Africa enjoys a long association with Radio Nfm and

Brunhild and congratulates the station on being selected from more than 750 entries

INTERNATIONAL NEWS

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1319

New IBE Members

The IBE recently welcomed two new members

The new member associations are

The Association of Supporting Children with Special Needs (AOSCCS) in Moldova

attained full membership Visit the website wwwasccsmden

The Italian Federation Epilepsies attained associate membership Visit the website

wwwfiepilessieit

This brings the number of IBE Full Members to 98 and Associate Members to 37 IBE is

now represented in 100 countries worldwide

To view the details for each IBE member please choose from the following regions below

View contact details for members in the African region

View contact details for members in the Eastern Mediterranean region

View contact details for members in the European region

View contact details for members in the Latin American regions

View contact details for members in the North American region

View contact details for members in the South East Asian region

View contact details for members in the Western Pacific region

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1419

New York State Considering SUDEP Legislation

The New York legislature is considering legislation (SB 6232 and AB 8444) which would

require the medical certificate portion of a death certificate to include whether the

deceased suffered a sudden unexpected death in epilepsy (SUDEP) Illinois and New

Jersey already have passed similar SUDEP laws Collecting SUDEP data is critical to

improve our understanding of epilepsy related deaths and will allow us to discover risk

factors and ways to prevent it

Source Epilepsy Foundation newsletter 20 May 2014

FACTS CORNER

US Congress Urging HHS to Remove Barriers to Marijuana Research

Representatives Blumenauer Griffith Rohrabacher and Schakowsky are circulating a

letter with their Congressional colleagues urging the Secretary of the Department of

Health and Human Services (HHS) to remove barriers for medical marijuana research

Studies on marijuana must go through extensive review processes beyond what is

required for other Schedule I substances making it harder for research into the

connection between seizures and marijuana to take place

Source Epilepsy Foundation newsletter 20 May 2014

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1519

New Epilepsy Publication

Epilepsy has been found to affect at least 7 out of every 1000 individuals in rural South

Africa according to an Agincourt study published by Ryan Wagner and colleagues in

Epilepsy Research The research led by Professor Charles Newton of the Department

of Psychiatry Oxford University and funded by the Welcome Trust highlights the fact

that epilepsy one of the most common neurological disorders globally is less common in

rural South Africa than other parts of sub-Saharan Africa This research raises a

potential connection between epilepsy and snoring and provides evidence that improving

obstetric services could epilepsy in this context

The full article is available here

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1619

Source httpwwwagincourtcozaindexphp201403new-epilepsy-publication 24

May 2014

WHATS HAPPENING

National Epilepsy Week 2014

Celebrate National Epilepsy Week from 16 to 22 June 2014 with the theme ldquoWho has

epilepsyrdquo This broad theme points out that epilepsy is not physically discernable ndash

anyone can have it at any time Contact the nearest Branch to you by dialling 0860

EPILEPSY

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1719

31st International Epilepsy Congress

The 31st International Epilepsy Congress (IEC) will take place in Istanbul Turkey

between 6 and 10 September 2015

The congress is organised jointly by the International League Against Epilepsy (ILAE)

and the International Bureau for Epilepsy (IBE) The scientific programme of the 31st IEC

promises to be innovative and engaging with a wide range of main and parallel sessions

as well as teaching and video sessions

Research Survey

Do you have epilepsy Are you between the ages of 18-40

If you answered YES to both questions then you may be eligible to participate in a

research project

The purpose of this study is to evaluate the relationships between epilepsy

psychological development and health and epilepsy-related self-management The

survey will take approximately 20-25 minutes and must be completed online Although

you will receive no direct benefit your participation will help us learn more about people

who live with epilepsy which will potentially benefit care providers and people with

epilepsy Some participants may have a sense of satisfaction in knowing that they have

contributed to knowledge about young adults living with epilepsy

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1819

If you are interested in participating please visit the survey website

httpswwwsurveymonkeycoms8ZY9J5G

This study is being conducted as dissertation research by Channing Harris a doctoral

candidate in the School of Psychology at Fielding Graduate University 2020 De la Vina

Street Santa Barbara California 93105-3814 The study is under the supervision of

Joan Read PhD faculty member and Director of Practicum Training at Fielding

Graduate University

Closing date for participation 13 June 2014

If yoursquod like more information contact Channing at

Email gharrisemailfieldingedu

Phone 011-1-805-364-2861

CONTACT US

follow on Twitter | friend on Facebook | forward to a friend

Copyright copy 2014 Epilepsy South Africa All rights reserved

unsubscribe from this list | update subscription preferences

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1919

Page 2: Table of Contents - Epilepsy newsletter... · 077 4408 and E-mail: lduplessis@icasa.org.za SADPD Changes Its Name Mr Kudakwashe (AK) Dube, Chief Executive Officer of the Secretariat

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 219

From the Desk of the National Director

Dear Readers

May was a month filled with highlights for Epilepsy South Africa Our Directors and

National Board met from 15 to 17 May 2014 to consider operational and policy issues

These national meetings only take place twice annually ndash usually in AprilMay and

September We look forward to the South CapeKaroo Branch hosting the September

2014 meetings in Knysna

Another highlight was the 2nd African Epilepsy Congress held in Cape Town from 21 to

24 May We welcomed visitors from across the African continent and even further afield

The presence of the leadership of both the IBE and ILAE was particularly significant

This included Athanasios Covannis (IBE President) Emilio Perucca (ILAE President) and

Ann Little (IBE CEO) as well as Anthony Zimba (IBE Vice-President for Africa) Youssouf

Noormamode (IBE Africa Chairperson) and Harmiena Riphagen (IBE Africa Secretary)

Our National Chairperson (Dr Phindi Mnguni) welcomed delegates to the Congress on

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 319

Wednesday evening She shared the platform with Master of Ceremonies Jo Wilmshurst

(a well-known paediatric neurologist at Red Cross Childrenrsquos Hospital) Dali Magazi

(National Chairperson of the Epilepsy Association of South Africa) Anthony Zimba

(Congress Co-Chair) Amadou Gallo Diop (Congress Co-Chair) Athanasios Covanis

(IBE President) and Emilio Perucca (ILAE President)

The first two days of the Congress focused strongly on the medical aspects of epilepsy

while Saturday was set aside as the Epilepsy amp Society Day Presentations focused on

the psycho-social impact of epilepsy with South Africa strongly represented by Nicole

Laxton (Epilepsy SA Youth Ambassador) and her mother Danica who spoke about their

experiences as well as Anne Fredericks who focused on epilepsy and elderly persons

and Johanna Keikelama who presented a research study conducted in South Africa

about epilepsy and traditional healers They were supported by Gretchen Birbeck (USA)

speaking on womenrsquos issues Robert Cole (Australia) on menrsquos issues and Harmiena

Riphagen (Namibia) on epilepsy and schooling

The IBE has agreed to make copies of presentations and papers available on their

website in the near future

Following the recent national and provincial elections we are pleased that the newly

announced Cabinet includes one Minister and two Deputy Ministers with disabilities

We include information about the newly constituted Cabinet elsewhere in this newsletter

In addition President Zuma announced the reconfiguration of the Department of Women

Children and Persons with Disabilities At the time of writing the new administration is

working out the operational details In the interim it is business as usual

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 419

One of the major decisions taken during the National Board meeting is the relocation of

the National Office to the Western Cape Branch in Lansdowne Cape Town during June

2014 Updated information will be made available via our website and our next

newsletter

Kind Regards

Marina Clarke

Towards a New NPO Act

by Sophie Hobbs

In this article the author takes a quick look at the latest version of the Draft NPO Policy

Framework on the Amendments of the Non-profit Organisations Act and possible

implications for the sector

The fifth draft of the Draft NPO Policy Framework on the Amendments of the Non-profit

Organisations Act 71 of 1997 was issued to non-profit organisations (NPOs) ahead of a

consultative meeting in Johannesburg at the end of March 2014 The Non-profit

Organisations Directorate has clearly taken pains to address the concerns of civil society

with this version of the framework which recognises the valuable contribution and role of

NPOs in building South Africarsquos economy

The Framework proposes an NPO Directorate as a specialised direct public service that

is lsquoa focussed and fully ring-fenced entityrsquo but still reports to the responsible Minister (in

this case the Minister for Social Development) Amendments to the Act will aspire lsquoto

promote transparency and accountability within the NPO sector without placing onerous

requirements on organisationsrsquo The business case for changes to the structure of the

Directorate will be developed through a feasibility study although it is not clear whether

the study will be by internal or independent researchers

Recognition Value

This fifth version of the framework is more inclusive than previous versions recognising

the important role of civil society in the development of the country It explicitly makes

the point that NPOs are not only delivering social services but contributing to economic

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 519

growth and stability The framework says ldquoIt is not the aim of government to simply write

unreasonably stringent measures that will hamper the growth of the NPO sectorrdquo

One of the striking things about the framework is the acknowledgement of how little is

known about the real size employment conditions salaries and income levels of the NPO

sector in South Africa While the Directorate is able to cite a growth in registrations of

more than 11 percent per annum it acknowledges that the majority of registered

organisations are still non-compliant and that some 80 percent of registered

organisations are voluntary associations

One of the proposals in the framework is for the Directorate to conduct research on the

lsquoincome levels and contribution to the South African economyrsquo of NPOs and make this

available to the public This should be welcomed and encouraged ndash the more we

understand about the South African NPO sector the better we will be able to lobby for

and jointly create enabling policies and practices

Reducing the Burden

A key component of the framework is the recognition of the burden of multiple

registrations and compliance mechanisms on NPOs and particularly that smaller

organisations are often unable to meet the minimum requirements GreaterGood

welcomes the proposal to simplify the registration processes and the assertion that

Trusts Voluntary Associations and Non-profit Companies should be subjected to the

same registration and compliance requirements

We also welcome the move towards electronic registration and faster turnaround times

working with a network of partners offering registration services in areas where Internet

penetration is not as good However we would like to urge the Directorate to investigate

the use of cellphone and USSD solutions which have been very successful at connecting

isolated communities with services in similar economies like Kenya and Nigeria

Size Is Not Everything

Another proposal to be welcomed is the lsquorisk-based approach for monitoring compliancersquo

and the recognition that because of the diversity of the sector the current lsquoone size fits

allrsquo approach is not appropriate However we would caution against the assumption that

the size of an organisation is the key factor in the assessment of risk According to the

framework ldquoThe larger the size and the higher the income levels of the organisationhellip

the more vulnerable and at risk the organisations can berdquo Over the last 10 years that

GreaterGood and GreaterCapital has assessed organisations and conducted project risk

ratings we have found that size and income levels are not necessarily associated with

greater risk There are many factors at play and a solid evidence-based risk

assessment tool should be developed to address this

Self-Regulation

The proposals in this version of the framework cover the concept of self-regulation by

the sector in some detail This is a long way from the first few versions which created

anxiety in the sector in terms of enforcement The fifth version explicitly states ldquothe

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 619

intention is not to create a body that will continually interfere in the affairs of

organisationsrdquo While we welcome the softer approach GreaterGood does have

concerns about what evidence there is of the efficacy of self-regulation There are a

number of good governance initiatives in existence already and disagreement within the

sector about which is the most appropriate We believe there is a need for an

independent unified compliance framework based on accurate information about size

income and expenditure practices and salary benchmarks in the NPO sector

While self-regulation is given recognition in the framework an NPO Tribunal and appeal

mechanism is still proposed to provide a dispute resolution process outside of the costly

and time consuming court process While this could be of great benefit to the sector our

concern is the make-up of the tribunal and the perception of its impartiality

Furthermore we are not sure that the lsquoblacklistingrsquo of organisations (which is still

proposed) is useful While we of course acknowledge that fraud and mismanagement

must be exposed the potential for hasty unfair and prejudicial lsquoblacklistingsrsquo ndash outside of

a judicial process ndash means that the process would have to be very carefully detailed and

followed

GreaterGood and GreaterCapital welcomes the open and consultative nature of the

process for developing this framework and believes that by working collectively the

resultant changes to the NPO Act will be able to meet the needs of our growing and

changing sector

Sophie Hobbs is the head of strategic communication at GreaterGood and

GreaterCapital This article first appeared in the Greater Impact 8 April 2014

Source wwwngopulsecoza 24 April 2014

ICASA Code for People w ith Disabilities

The ICASA Code for People with Disabilities (currently under review) was circulated for

public comment The deadline for comment has come and gone and ICASA will be

holding public hearings in provinces in the coming months

KwaZulu-Natal 20 June

2014

Sandile Ndlovu 031-334-

Limpopo 26 June

Mavhungu Makatu 011-566-

3429

Western Cape 27 June

Xolile Mateza 021-431-

9804

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 719

9529 SNdlovuicasaorgza MMAkatuicasaorgza XMatezaicasaorgza

Eastern Cape 30 June

Mpho Moletsane 041-394-

1609

MMoletsaneicasaorgza

Mpumalanga 3 July

Mavhungu Makatu 011-566-

3429

MMAkatuicasaorgza

Northern Cape 3 July

Please liaise directly with the contact person in your province with regards venues time

and reasonable accommodation needs

For any other queries or to obtain details for other provinces please contact Lize du

Plessis Consumer Affairs Department Independent Communications Authority of South

Africa (ICASA) Bloemfontein Regional Office Phone (051) 411-5904 Cell phone 073

077 4408 and E-mail lduplessisicasaorgza

SADPD Changes Its Name

Mr Kudakwashe (AK) Dube Chief Executive Officer of the Secretariat of the African

Decade of Persons with Disability (SADPD) issued a press release that the name was

changed to Africa Disability Alliance (ADA) with effect from 11 April 2014 This completes

a few years of planning and consultations aimed at having a clearly defined name that is

short concise and not linked to any timeframe The new name can now be used in all

correspondence legal and other documents

The change was necessitated by the need to shorten the name de-link it from a lsquodecadersquo

timeframe There was a need to adopt a name that communicates the fact that the

organisation is an African broad-based regional technical agency that works through

alliances and networks using a broad range of tools that emanate from the UN AU and

other jurisdictions

ADA is led and managed by people with disabilities The General Assembly and Board

of ADA are comprised of diverse-disability membership of more than twelve continental

organisations and networks in Africa

It is important to note that

1 The registration number and original date of registration remain unchanged

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 819

2 ADA will continue to be a non-profit corporation (NPC) in line with the amended

Companies Act (2008)

3 ADArsquos logos addressesbranding business start date main and ancillary

objectives will reflect the new name but remain the same

The registration of ADA launches a new phase in the development and maturity of the

organisation

The South African Cabinet

Post Minister Deputy Minister(s)

Minister in the Presidency Jeff Radebe Kebby Maphatsoe

Minister of Women in the

PresidencySusan Shabangu

Finance Nhlanhla Nene Mcebisi Jonas

Water and Sanitation Nomvula Mokonyane Pam Tshwete

Communications Faith Muthambi Stella Ndabeni-Abrahams

International Relations and

CooperationMaite Nkoana-Mashabane

Noma-India Mfeketo

Lluwelyn Landers

Police Nkosinathi Nhleko Maggie Sotyu

Public Service and

AdministrationCollins Chabane Ayanda Dlodlo

Human Settlements Lindiwe Sisulu Zoe Kota-Hendricks

Economic Development Ebrahim Patel Madala Masuku

Trade and Industry Rob Davies Mzwandile Masina

Science and Technology Naledi Pandor

Home Affairs Malusi Gigaba Fatima Chohan

Higher Education and

TrainingBlade Nzimande Mduduzi Manana

Energy Tina Joemat-Pettersson Thembi Majola

Justice and Correctional

ServicesMichael Masutha

John Jeffery Thabang

Makwetla

Agriculture Forestry andSenzeni Zokwana Bheki Cele

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 919

Fisheries

Sport and Recreation Fikile Mbalula Gert Oosthuizen

Small Business Development Lindiwe Zulu Elizabeth Thabethe

Mineral Resources Ngoako Ramathlodi Godfrey Oliphant

Cooperative Governance and

Traditional AffairsPravin Gordhan Andries Nel Obed Bapela

Defence and Military

Veterans Nosiviwe Mapisa-Nqakula Kebby Maphatsoe

Environmental Affairs Edna Molewa Barbara Thomson

State Security David Mahlobo Ellen Molekane

Basic Education Angie Motshekga Enver Surty

Rural Development and Land

ReformGugile Nkwinti

Mcebisi Skwatsha Candith

Mashego-Dlamini

Telecommunications and

Postal ServicesSIyabonga Cwele Hlengiwe Mkhize

Transport Dipuo Peters Sindi Chikunga

Social Development Bathabile Dlamini Henrietta Bogopane-Zulu

Public Enterprises Lynne Brown Gratitude Magwanishe

Labour Mildred Oliphant Inkosi Patekile Holomisa

Arts and Culture Nathi Mthethwa Rejoice Mabudafhasi

Public Works Thulas Nxesi Jeremy Cronin

Tourism Derek Hanekom Thokozile Xasa

Health Aaron Motsoaledi Joe Phaahla

National Mental Health Policy Frameword amp Strategic Plan 2013-2020

The National Department of Health publish this document which they claim is a new

mental health system based on primary health care (PHC) principles Read the plan

here

Source SA NCD AlliancePHANGO Newsletter Vol 1 (5)

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1019

New Draft National Disability Policy Changes Focus

The first Draft White Paper relating to the revised National Disability Policy which

introduces the concept of ldquoduty bearersrdquo and charges them with responsibility for

ensuring the implementation of the provisions of the policy is expected to be signed off

by the incoming Minister of Women Children and People with Disabilities in June this

year

It will then be released for public comment following cabinet approval in August and

should hopefully be ready to be launched on 3 December National Day of People with

Disabilities

Thatrsquos according to Lidia Pretorius DWCPWDrsquos Chief Director Monitoring and

Evaluation of the Rights of Persons with Disability who said much of the focus of the new

policy was directed at ensuring the mainstreaming of persons with disabilities in all walks

of life including in the workforce

Speaking at the SAE4D breakfast last month Ms Pretorius said that duty bearers - those

who are in a position to make a difference from captains of industry to government

officials ndash will be deemed to have intentionally discriminated against persons with

disabilities (a criminal offence) if they are unable to provide evidence that they

Acknowledged that there are barriers which exclude persons with

disabilitiesdetract from their access or participation

Identified potential barriers

Put in place measures to minimiseremove barriers

Budgeted for these measures

Can report on progress with implementation

Can measure impact

ldquoWe are moving beyond begging and encouragementrdquo she said ldquoWe want results The

new policy is based on four key pillars Human Right Universal Access Design

Mainstreaming and Self-Representation Its purpose is to ensure equality for people

with disabilitiesrdquo

The new policy is designed to bring the National Disability Policy in line with the

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1119

Governmentrsquos Medium Term Strategic Framework 2014 ndash 2019 and to address the

shortcomings identified in the 2011 Draft Policy which did not fully make provision for its

integration into the government outcomes-based planning approach or the integration of

mainstreaming guidelines

ldquoDisabilityrdquo Ms Pretorius said ldquois not something a person has Disability is imposed by

society when a person with a long-term impairment is denied access to full participation

in all aspects of life and when society fails to uphold the rights and specific needs of

individuals with impairmentsrdquo

In terms of the new policy persons with disabilities will include all those who have long-

term physical psychosocial cognitive andor sensory impairments which in interaction

with various barriers may hinder their full and effective participation in society on an

equal basis with others SAE4D will be participating in consultations with the DWCPD

and monitoring the progress of the new Draft Policy and will keep members informed

about all new developments

Source South African Employers 4 Disability newsletter Issue 2 April 2014

South African NCD Strategic Plan 2013-2017

If you have not yet read the 4-year strategic plan for non-communicable diseases (NCD)

you can download it by clicking here

Source SA NCD AlliancePHANGO Newsletter Vol 1 (5)

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1219

Northern Cape Scoops Local Media Award

Radio Nfm in Namaqualand represented by guiding management member Brunhild

Strauss proudly walked away with top honours by being chosen as the Best Community

Radio Station in South Africa during the Local Media Awards in South Africa The

National Office of Epilepsy South Africa enjoys a long association with Radio Nfm and

Brunhild and congratulates the station on being selected from more than 750 entries

INTERNATIONAL NEWS

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1319

New IBE Members

The IBE recently welcomed two new members

The new member associations are

The Association of Supporting Children with Special Needs (AOSCCS) in Moldova

attained full membership Visit the website wwwasccsmden

The Italian Federation Epilepsies attained associate membership Visit the website

wwwfiepilessieit

This brings the number of IBE Full Members to 98 and Associate Members to 37 IBE is

now represented in 100 countries worldwide

To view the details for each IBE member please choose from the following regions below

View contact details for members in the African region

View contact details for members in the Eastern Mediterranean region

View contact details for members in the European region

View contact details for members in the Latin American regions

View contact details for members in the North American region

View contact details for members in the South East Asian region

View contact details for members in the Western Pacific region

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1419

New York State Considering SUDEP Legislation

The New York legislature is considering legislation (SB 6232 and AB 8444) which would

require the medical certificate portion of a death certificate to include whether the

deceased suffered a sudden unexpected death in epilepsy (SUDEP) Illinois and New

Jersey already have passed similar SUDEP laws Collecting SUDEP data is critical to

improve our understanding of epilepsy related deaths and will allow us to discover risk

factors and ways to prevent it

Source Epilepsy Foundation newsletter 20 May 2014

FACTS CORNER

US Congress Urging HHS to Remove Barriers to Marijuana Research

Representatives Blumenauer Griffith Rohrabacher and Schakowsky are circulating a

letter with their Congressional colleagues urging the Secretary of the Department of

Health and Human Services (HHS) to remove barriers for medical marijuana research

Studies on marijuana must go through extensive review processes beyond what is

required for other Schedule I substances making it harder for research into the

connection between seizures and marijuana to take place

Source Epilepsy Foundation newsletter 20 May 2014

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1519

New Epilepsy Publication

Epilepsy has been found to affect at least 7 out of every 1000 individuals in rural South

Africa according to an Agincourt study published by Ryan Wagner and colleagues in

Epilepsy Research The research led by Professor Charles Newton of the Department

of Psychiatry Oxford University and funded by the Welcome Trust highlights the fact

that epilepsy one of the most common neurological disorders globally is less common in

rural South Africa than other parts of sub-Saharan Africa This research raises a

potential connection between epilepsy and snoring and provides evidence that improving

obstetric services could epilepsy in this context

The full article is available here

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1619

Source httpwwwagincourtcozaindexphp201403new-epilepsy-publication 24

May 2014

WHATS HAPPENING

National Epilepsy Week 2014

Celebrate National Epilepsy Week from 16 to 22 June 2014 with the theme ldquoWho has

epilepsyrdquo This broad theme points out that epilepsy is not physically discernable ndash

anyone can have it at any time Contact the nearest Branch to you by dialling 0860

EPILEPSY

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1719

31st International Epilepsy Congress

The 31st International Epilepsy Congress (IEC) will take place in Istanbul Turkey

between 6 and 10 September 2015

The congress is organised jointly by the International League Against Epilepsy (ILAE)

and the International Bureau for Epilepsy (IBE) The scientific programme of the 31st IEC

promises to be innovative and engaging with a wide range of main and parallel sessions

as well as teaching and video sessions

Research Survey

Do you have epilepsy Are you between the ages of 18-40

If you answered YES to both questions then you may be eligible to participate in a

research project

The purpose of this study is to evaluate the relationships between epilepsy

psychological development and health and epilepsy-related self-management The

survey will take approximately 20-25 minutes and must be completed online Although

you will receive no direct benefit your participation will help us learn more about people

who live with epilepsy which will potentially benefit care providers and people with

epilepsy Some participants may have a sense of satisfaction in knowing that they have

contributed to knowledge about young adults living with epilepsy

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1819

If you are interested in participating please visit the survey website

httpswwwsurveymonkeycoms8ZY9J5G

This study is being conducted as dissertation research by Channing Harris a doctoral

candidate in the School of Psychology at Fielding Graduate University 2020 De la Vina

Street Santa Barbara California 93105-3814 The study is under the supervision of

Joan Read PhD faculty member and Director of Practicum Training at Fielding

Graduate University

Closing date for participation 13 June 2014

If yoursquod like more information contact Channing at

Email gharrisemailfieldingedu

Phone 011-1-805-364-2861

CONTACT US

follow on Twitter | friend on Facebook | forward to a friend

Copyright copy 2014 Epilepsy South Africa All rights reserved

unsubscribe from this list | update subscription preferences

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1919

Page 3: Table of Contents - Epilepsy newsletter... · 077 4408 and E-mail: lduplessis@icasa.org.za SADPD Changes Its Name Mr Kudakwashe (AK) Dube, Chief Executive Officer of the Secretariat

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 319

Wednesday evening She shared the platform with Master of Ceremonies Jo Wilmshurst

(a well-known paediatric neurologist at Red Cross Childrenrsquos Hospital) Dali Magazi

(National Chairperson of the Epilepsy Association of South Africa) Anthony Zimba

(Congress Co-Chair) Amadou Gallo Diop (Congress Co-Chair) Athanasios Covanis

(IBE President) and Emilio Perucca (ILAE President)

The first two days of the Congress focused strongly on the medical aspects of epilepsy

while Saturday was set aside as the Epilepsy amp Society Day Presentations focused on

the psycho-social impact of epilepsy with South Africa strongly represented by Nicole

Laxton (Epilepsy SA Youth Ambassador) and her mother Danica who spoke about their

experiences as well as Anne Fredericks who focused on epilepsy and elderly persons

and Johanna Keikelama who presented a research study conducted in South Africa

about epilepsy and traditional healers They were supported by Gretchen Birbeck (USA)

speaking on womenrsquos issues Robert Cole (Australia) on menrsquos issues and Harmiena

Riphagen (Namibia) on epilepsy and schooling

The IBE has agreed to make copies of presentations and papers available on their

website in the near future

Following the recent national and provincial elections we are pleased that the newly

announced Cabinet includes one Minister and two Deputy Ministers with disabilities

We include information about the newly constituted Cabinet elsewhere in this newsletter

In addition President Zuma announced the reconfiguration of the Department of Women

Children and Persons with Disabilities At the time of writing the new administration is

working out the operational details In the interim it is business as usual

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 419

One of the major decisions taken during the National Board meeting is the relocation of

the National Office to the Western Cape Branch in Lansdowne Cape Town during June

2014 Updated information will be made available via our website and our next

newsletter

Kind Regards

Marina Clarke

Towards a New NPO Act

by Sophie Hobbs

In this article the author takes a quick look at the latest version of the Draft NPO Policy

Framework on the Amendments of the Non-profit Organisations Act and possible

implications for the sector

The fifth draft of the Draft NPO Policy Framework on the Amendments of the Non-profit

Organisations Act 71 of 1997 was issued to non-profit organisations (NPOs) ahead of a

consultative meeting in Johannesburg at the end of March 2014 The Non-profit

Organisations Directorate has clearly taken pains to address the concerns of civil society

with this version of the framework which recognises the valuable contribution and role of

NPOs in building South Africarsquos economy

The Framework proposes an NPO Directorate as a specialised direct public service that

is lsquoa focussed and fully ring-fenced entityrsquo but still reports to the responsible Minister (in

this case the Minister for Social Development) Amendments to the Act will aspire lsquoto

promote transparency and accountability within the NPO sector without placing onerous

requirements on organisationsrsquo The business case for changes to the structure of the

Directorate will be developed through a feasibility study although it is not clear whether

the study will be by internal or independent researchers

Recognition Value

This fifth version of the framework is more inclusive than previous versions recognising

the important role of civil society in the development of the country It explicitly makes

the point that NPOs are not only delivering social services but contributing to economic

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 519

growth and stability The framework says ldquoIt is not the aim of government to simply write

unreasonably stringent measures that will hamper the growth of the NPO sectorrdquo

One of the striking things about the framework is the acknowledgement of how little is

known about the real size employment conditions salaries and income levels of the NPO

sector in South Africa While the Directorate is able to cite a growth in registrations of

more than 11 percent per annum it acknowledges that the majority of registered

organisations are still non-compliant and that some 80 percent of registered

organisations are voluntary associations

One of the proposals in the framework is for the Directorate to conduct research on the

lsquoincome levels and contribution to the South African economyrsquo of NPOs and make this

available to the public This should be welcomed and encouraged ndash the more we

understand about the South African NPO sector the better we will be able to lobby for

and jointly create enabling policies and practices

Reducing the Burden

A key component of the framework is the recognition of the burden of multiple

registrations and compliance mechanisms on NPOs and particularly that smaller

organisations are often unable to meet the minimum requirements GreaterGood

welcomes the proposal to simplify the registration processes and the assertion that

Trusts Voluntary Associations and Non-profit Companies should be subjected to the

same registration and compliance requirements

We also welcome the move towards electronic registration and faster turnaround times

working with a network of partners offering registration services in areas where Internet

penetration is not as good However we would like to urge the Directorate to investigate

the use of cellphone and USSD solutions which have been very successful at connecting

isolated communities with services in similar economies like Kenya and Nigeria

Size Is Not Everything

Another proposal to be welcomed is the lsquorisk-based approach for monitoring compliancersquo

and the recognition that because of the diversity of the sector the current lsquoone size fits

allrsquo approach is not appropriate However we would caution against the assumption that

the size of an organisation is the key factor in the assessment of risk According to the

framework ldquoThe larger the size and the higher the income levels of the organisationhellip

the more vulnerable and at risk the organisations can berdquo Over the last 10 years that

GreaterGood and GreaterCapital has assessed organisations and conducted project risk

ratings we have found that size and income levels are not necessarily associated with

greater risk There are many factors at play and a solid evidence-based risk

assessment tool should be developed to address this

Self-Regulation

The proposals in this version of the framework cover the concept of self-regulation by

the sector in some detail This is a long way from the first few versions which created

anxiety in the sector in terms of enforcement The fifth version explicitly states ldquothe

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 619

intention is not to create a body that will continually interfere in the affairs of

organisationsrdquo While we welcome the softer approach GreaterGood does have

concerns about what evidence there is of the efficacy of self-regulation There are a

number of good governance initiatives in existence already and disagreement within the

sector about which is the most appropriate We believe there is a need for an

independent unified compliance framework based on accurate information about size

income and expenditure practices and salary benchmarks in the NPO sector

While self-regulation is given recognition in the framework an NPO Tribunal and appeal

mechanism is still proposed to provide a dispute resolution process outside of the costly

and time consuming court process While this could be of great benefit to the sector our

concern is the make-up of the tribunal and the perception of its impartiality

Furthermore we are not sure that the lsquoblacklistingrsquo of organisations (which is still

proposed) is useful While we of course acknowledge that fraud and mismanagement

must be exposed the potential for hasty unfair and prejudicial lsquoblacklistingsrsquo ndash outside of

a judicial process ndash means that the process would have to be very carefully detailed and

followed

GreaterGood and GreaterCapital welcomes the open and consultative nature of the

process for developing this framework and believes that by working collectively the

resultant changes to the NPO Act will be able to meet the needs of our growing and

changing sector

Sophie Hobbs is the head of strategic communication at GreaterGood and

GreaterCapital This article first appeared in the Greater Impact 8 April 2014

Source wwwngopulsecoza 24 April 2014

ICASA Code for People w ith Disabilities

The ICASA Code for People with Disabilities (currently under review) was circulated for

public comment The deadline for comment has come and gone and ICASA will be

holding public hearings in provinces in the coming months

KwaZulu-Natal 20 June

2014

Sandile Ndlovu 031-334-

Limpopo 26 June

Mavhungu Makatu 011-566-

3429

Western Cape 27 June

Xolile Mateza 021-431-

9804

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 719

9529 SNdlovuicasaorgza MMAkatuicasaorgza XMatezaicasaorgza

Eastern Cape 30 June

Mpho Moletsane 041-394-

1609

MMoletsaneicasaorgza

Mpumalanga 3 July

Mavhungu Makatu 011-566-

3429

MMAkatuicasaorgza

Northern Cape 3 July

Please liaise directly with the contact person in your province with regards venues time

and reasonable accommodation needs

For any other queries or to obtain details for other provinces please contact Lize du

Plessis Consumer Affairs Department Independent Communications Authority of South

Africa (ICASA) Bloemfontein Regional Office Phone (051) 411-5904 Cell phone 073

077 4408 and E-mail lduplessisicasaorgza

SADPD Changes Its Name

Mr Kudakwashe (AK) Dube Chief Executive Officer of the Secretariat of the African

Decade of Persons with Disability (SADPD) issued a press release that the name was

changed to Africa Disability Alliance (ADA) with effect from 11 April 2014 This completes

a few years of planning and consultations aimed at having a clearly defined name that is

short concise and not linked to any timeframe The new name can now be used in all

correspondence legal and other documents

The change was necessitated by the need to shorten the name de-link it from a lsquodecadersquo

timeframe There was a need to adopt a name that communicates the fact that the

organisation is an African broad-based regional technical agency that works through

alliances and networks using a broad range of tools that emanate from the UN AU and

other jurisdictions

ADA is led and managed by people with disabilities The General Assembly and Board

of ADA are comprised of diverse-disability membership of more than twelve continental

organisations and networks in Africa

It is important to note that

1 The registration number and original date of registration remain unchanged

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 819

2 ADA will continue to be a non-profit corporation (NPC) in line with the amended

Companies Act (2008)

3 ADArsquos logos addressesbranding business start date main and ancillary

objectives will reflect the new name but remain the same

The registration of ADA launches a new phase in the development and maturity of the

organisation

The South African Cabinet

Post Minister Deputy Minister(s)

Minister in the Presidency Jeff Radebe Kebby Maphatsoe

Minister of Women in the

PresidencySusan Shabangu

Finance Nhlanhla Nene Mcebisi Jonas

Water and Sanitation Nomvula Mokonyane Pam Tshwete

Communications Faith Muthambi Stella Ndabeni-Abrahams

International Relations and

CooperationMaite Nkoana-Mashabane

Noma-India Mfeketo

Lluwelyn Landers

Police Nkosinathi Nhleko Maggie Sotyu

Public Service and

AdministrationCollins Chabane Ayanda Dlodlo

Human Settlements Lindiwe Sisulu Zoe Kota-Hendricks

Economic Development Ebrahim Patel Madala Masuku

Trade and Industry Rob Davies Mzwandile Masina

Science and Technology Naledi Pandor

Home Affairs Malusi Gigaba Fatima Chohan

Higher Education and

TrainingBlade Nzimande Mduduzi Manana

Energy Tina Joemat-Pettersson Thembi Majola

Justice and Correctional

ServicesMichael Masutha

John Jeffery Thabang

Makwetla

Agriculture Forestry andSenzeni Zokwana Bheki Cele

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 919

Fisheries

Sport and Recreation Fikile Mbalula Gert Oosthuizen

Small Business Development Lindiwe Zulu Elizabeth Thabethe

Mineral Resources Ngoako Ramathlodi Godfrey Oliphant

Cooperative Governance and

Traditional AffairsPravin Gordhan Andries Nel Obed Bapela

Defence and Military

Veterans Nosiviwe Mapisa-Nqakula Kebby Maphatsoe

Environmental Affairs Edna Molewa Barbara Thomson

State Security David Mahlobo Ellen Molekane

Basic Education Angie Motshekga Enver Surty

Rural Development and Land

ReformGugile Nkwinti

Mcebisi Skwatsha Candith

Mashego-Dlamini

Telecommunications and

Postal ServicesSIyabonga Cwele Hlengiwe Mkhize

Transport Dipuo Peters Sindi Chikunga

Social Development Bathabile Dlamini Henrietta Bogopane-Zulu

Public Enterprises Lynne Brown Gratitude Magwanishe

Labour Mildred Oliphant Inkosi Patekile Holomisa

Arts and Culture Nathi Mthethwa Rejoice Mabudafhasi

Public Works Thulas Nxesi Jeremy Cronin

Tourism Derek Hanekom Thokozile Xasa

Health Aaron Motsoaledi Joe Phaahla

National Mental Health Policy Frameword amp Strategic Plan 2013-2020

The National Department of Health publish this document which they claim is a new

mental health system based on primary health care (PHC) principles Read the plan

here

Source SA NCD AlliancePHANGO Newsletter Vol 1 (5)

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1019

New Draft National Disability Policy Changes Focus

The first Draft White Paper relating to the revised National Disability Policy which

introduces the concept of ldquoduty bearersrdquo and charges them with responsibility for

ensuring the implementation of the provisions of the policy is expected to be signed off

by the incoming Minister of Women Children and People with Disabilities in June this

year

It will then be released for public comment following cabinet approval in August and

should hopefully be ready to be launched on 3 December National Day of People with

Disabilities

Thatrsquos according to Lidia Pretorius DWCPWDrsquos Chief Director Monitoring and

Evaluation of the Rights of Persons with Disability who said much of the focus of the new

policy was directed at ensuring the mainstreaming of persons with disabilities in all walks

of life including in the workforce

Speaking at the SAE4D breakfast last month Ms Pretorius said that duty bearers - those

who are in a position to make a difference from captains of industry to government

officials ndash will be deemed to have intentionally discriminated against persons with

disabilities (a criminal offence) if they are unable to provide evidence that they

Acknowledged that there are barriers which exclude persons with

disabilitiesdetract from their access or participation

Identified potential barriers

Put in place measures to minimiseremove barriers

Budgeted for these measures

Can report on progress with implementation

Can measure impact

ldquoWe are moving beyond begging and encouragementrdquo she said ldquoWe want results The

new policy is based on four key pillars Human Right Universal Access Design

Mainstreaming and Self-Representation Its purpose is to ensure equality for people

with disabilitiesrdquo

The new policy is designed to bring the National Disability Policy in line with the

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1119

Governmentrsquos Medium Term Strategic Framework 2014 ndash 2019 and to address the

shortcomings identified in the 2011 Draft Policy which did not fully make provision for its

integration into the government outcomes-based planning approach or the integration of

mainstreaming guidelines

ldquoDisabilityrdquo Ms Pretorius said ldquois not something a person has Disability is imposed by

society when a person with a long-term impairment is denied access to full participation

in all aspects of life and when society fails to uphold the rights and specific needs of

individuals with impairmentsrdquo

In terms of the new policy persons with disabilities will include all those who have long-

term physical psychosocial cognitive andor sensory impairments which in interaction

with various barriers may hinder their full and effective participation in society on an

equal basis with others SAE4D will be participating in consultations with the DWCPD

and monitoring the progress of the new Draft Policy and will keep members informed

about all new developments

Source South African Employers 4 Disability newsletter Issue 2 April 2014

South African NCD Strategic Plan 2013-2017

If you have not yet read the 4-year strategic plan for non-communicable diseases (NCD)

you can download it by clicking here

Source SA NCD AlliancePHANGO Newsletter Vol 1 (5)

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1219

Northern Cape Scoops Local Media Award

Radio Nfm in Namaqualand represented by guiding management member Brunhild

Strauss proudly walked away with top honours by being chosen as the Best Community

Radio Station in South Africa during the Local Media Awards in South Africa The

National Office of Epilepsy South Africa enjoys a long association with Radio Nfm and

Brunhild and congratulates the station on being selected from more than 750 entries

INTERNATIONAL NEWS

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1319

New IBE Members

The IBE recently welcomed two new members

The new member associations are

The Association of Supporting Children with Special Needs (AOSCCS) in Moldova

attained full membership Visit the website wwwasccsmden

The Italian Federation Epilepsies attained associate membership Visit the website

wwwfiepilessieit

This brings the number of IBE Full Members to 98 and Associate Members to 37 IBE is

now represented in 100 countries worldwide

To view the details for each IBE member please choose from the following regions below

View contact details for members in the African region

View contact details for members in the Eastern Mediterranean region

View contact details for members in the European region

View contact details for members in the Latin American regions

View contact details for members in the North American region

View contact details for members in the South East Asian region

View contact details for members in the Western Pacific region

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1419

New York State Considering SUDEP Legislation

The New York legislature is considering legislation (SB 6232 and AB 8444) which would

require the medical certificate portion of a death certificate to include whether the

deceased suffered a sudden unexpected death in epilepsy (SUDEP) Illinois and New

Jersey already have passed similar SUDEP laws Collecting SUDEP data is critical to

improve our understanding of epilepsy related deaths and will allow us to discover risk

factors and ways to prevent it

Source Epilepsy Foundation newsletter 20 May 2014

FACTS CORNER

US Congress Urging HHS to Remove Barriers to Marijuana Research

Representatives Blumenauer Griffith Rohrabacher and Schakowsky are circulating a

letter with their Congressional colleagues urging the Secretary of the Department of

Health and Human Services (HHS) to remove barriers for medical marijuana research

Studies on marijuana must go through extensive review processes beyond what is

required for other Schedule I substances making it harder for research into the

connection between seizures and marijuana to take place

Source Epilepsy Foundation newsletter 20 May 2014

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1519

New Epilepsy Publication

Epilepsy has been found to affect at least 7 out of every 1000 individuals in rural South

Africa according to an Agincourt study published by Ryan Wagner and colleagues in

Epilepsy Research The research led by Professor Charles Newton of the Department

of Psychiatry Oxford University and funded by the Welcome Trust highlights the fact

that epilepsy one of the most common neurological disorders globally is less common in

rural South Africa than other parts of sub-Saharan Africa This research raises a

potential connection between epilepsy and snoring and provides evidence that improving

obstetric services could epilepsy in this context

The full article is available here

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1619

Source httpwwwagincourtcozaindexphp201403new-epilepsy-publication 24

May 2014

WHATS HAPPENING

National Epilepsy Week 2014

Celebrate National Epilepsy Week from 16 to 22 June 2014 with the theme ldquoWho has

epilepsyrdquo This broad theme points out that epilepsy is not physically discernable ndash

anyone can have it at any time Contact the nearest Branch to you by dialling 0860

EPILEPSY

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1719

31st International Epilepsy Congress

The 31st International Epilepsy Congress (IEC) will take place in Istanbul Turkey

between 6 and 10 September 2015

The congress is organised jointly by the International League Against Epilepsy (ILAE)

and the International Bureau for Epilepsy (IBE) The scientific programme of the 31st IEC

promises to be innovative and engaging with a wide range of main and parallel sessions

as well as teaching and video sessions

Research Survey

Do you have epilepsy Are you between the ages of 18-40

If you answered YES to both questions then you may be eligible to participate in a

research project

The purpose of this study is to evaluate the relationships between epilepsy

psychological development and health and epilepsy-related self-management The

survey will take approximately 20-25 minutes and must be completed online Although

you will receive no direct benefit your participation will help us learn more about people

who live with epilepsy which will potentially benefit care providers and people with

epilepsy Some participants may have a sense of satisfaction in knowing that they have

contributed to knowledge about young adults living with epilepsy

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1819

If you are interested in participating please visit the survey website

httpswwwsurveymonkeycoms8ZY9J5G

This study is being conducted as dissertation research by Channing Harris a doctoral

candidate in the School of Psychology at Fielding Graduate University 2020 De la Vina

Street Santa Barbara California 93105-3814 The study is under the supervision of

Joan Read PhD faculty member and Director of Practicum Training at Fielding

Graduate University

Closing date for participation 13 June 2014

If yoursquod like more information contact Channing at

Email gharrisemailfieldingedu

Phone 011-1-805-364-2861

CONTACT US

follow on Twitter | friend on Facebook | forward to a friend

Copyright copy 2014 Epilepsy South Africa All rights reserved

unsubscribe from this list | update subscription preferences

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1919

Page 4: Table of Contents - Epilepsy newsletter... · 077 4408 and E-mail: lduplessis@icasa.org.za SADPD Changes Its Name Mr Kudakwashe (AK) Dube, Chief Executive Officer of the Secretariat

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 419

One of the major decisions taken during the National Board meeting is the relocation of

the National Office to the Western Cape Branch in Lansdowne Cape Town during June

2014 Updated information will be made available via our website and our next

newsletter

Kind Regards

Marina Clarke

Towards a New NPO Act

by Sophie Hobbs

In this article the author takes a quick look at the latest version of the Draft NPO Policy

Framework on the Amendments of the Non-profit Organisations Act and possible

implications for the sector

The fifth draft of the Draft NPO Policy Framework on the Amendments of the Non-profit

Organisations Act 71 of 1997 was issued to non-profit organisations (NPOs) ahead of a

consultative meeting in Johannesburg at the end of March 2014 The Non-profit

Organisations Directorate has clearly taken pains to address the concerns of civil society

with this version of the framework which recognises the valuable contribution and role of

NPOs in building South Africarsquos economy

The Framework proposes an NPO Directorate as a specialised direct public service that

is lsquoa focussed and fully ring-fenced entityrsquo but still reports to the responsible Minister (in

this case the Minister for Social Development) Amendments to the Act will aspire lsquoto

promote transparency and accountability within the NPO sector without placing onerous

requirements on organisationsrsquo The business case for changes to the structure of the

Directorate will be developed through a feasibility study although it is not clear whether

the study will be by internal or independent researchers

Recognition Value

This fifth version of the framework is more inclusive than previous versions recognising

the important role of civil society in the development of the country It explicitly makes

the point that NPOs are not only delivering social services but contributing to economic

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 519

growth and stability The framework says ldquoIt is not the aim of government to simply write

unreasonably stringent measures that will hamper the growth of the NPO sectorrdquo

One of the striking things about the framework is the acknowledgement of how little is

known about the real size employment conditions salaries and income levels of the NPO

sector in South Africa While the Directorate is able to cite a growth in registrations of

more than 11 percent per annum it acknowledges that the majority of registered

organisations are still non-compliant and that some 80 percent of registered

organisations are voluntary associations

One of the proposals in the framework is for the Directorate to conduct research on the

lsquoincome levels and contribution to the South African economyrsquo of NPOs and make this

available to the public This should be welcomed and encouraged ndash the more we

understand about the South African NPO sector the better we will be able to lobby for

and jointly create enabling policies and practices

Reducing the Burden

A key component of the framework is the recognition of the burden of multiple

registrations and compliance mechanisms on NPOs and particularly that smaller

organisations are often unable to meet the minimum requirements GreaterGood

welcomes the proposal to simplify the registration processes and the assertion that

Trusts Voluntary Associations and Non-profit Companies should be subjected to the

same registration and compliance requirements

We also welcome the move towards electronic registration and faster turnaround times

working with a network of partners offering registration services in areas where Internet

penetration is not as good However we would like to urge the Directorate to investigate

the use of cellphone and USSD solutions which have been very successful at connecting

isolated communities with services in similar economies like Kenya and Nigeria

Size Is Not Everything

Another proposal to be welcomed is the lsquorisk-based approach for monitoring compliancersquo

and the recognition that because of the diversity of the sector the current lsquoone size fits

allrsquo approach is not appropriate However we would caution against the assumption that

the size of an organisation is the key factor in the assessment of risk According to the

framework ldquoThe larger the size and the higher the income levels of the organisationhellip

the more vulnerable and at risk the organisations can berdquo Over the last 10 years that

GreaterGood and GreaterCapital has assessed organisations and conducted project risk

ratings we have found that size and income levels are not necessarily associated with

greater risk There are many factors at play and a solid evidence-based risk

assessment tool should be developed to address this

Self-Regulation

The proposals in this version of the framework cover the concept of self-regulation by

the sector in some detail This is a long way from the first few versions which created

anxiety in the sector in terms of enforcement The fifth version explicitly states ldquothe

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 619

intention is not to create a body that will continually interfere in the affairs of

organisationsrdquo While we welcome the softer approach GreaterGood does have

concerns about what evidence there is of the efficacy of self-regulation There are a

number of good governance initiatives in existence already and disagreement within the

sector about which is the most appropriate We believe there is a need for an

independent unified compliance framework based on accurate information about size

income and expenditure practices and salary benchmarks in the NPO sector

While self-regulation is given recognition in the framework an NPO Tribunal and appeal

mechanism is still proposed to provide a dispute resolution process outside of the costly

and time consuming court process While this could be of great benefit to the sector our

concern is the make-up of the tribunal and the perception of its impartiality

Furthermore we are not sure that the lsquoblacklistingrsquo of organisations (which is still

proposed) is useful While we of course acknowledge that fraud and mismanagement

must be exposed the potential for hasty unfair and prejudicial lsquoblacklistingsrsquo ndash outside of

a judicial process ndash means that the process would have to be very carefully detailed and

followed

GreaterGood and GreaterCapital welcomes the open and consultative nature of the

process for developing this framework and believes that by working collectively the

resultant changes to the NPO Act will be able to meet the needs of our growing and

changing sector

Sophie Hobbs is the head of strategic communication at GreaterGood and

GreaterCapital This article first appeared in the Greater Impact 8 April 2014

Source wwwngopulsecoza 24 April 2014

ICASA Code for People w ith Disabilities

The ICASA Code for People with Disabilities (currently under review) was circulated for

public comment The deadline for comment has come and gone and ICASA will be

holding public hearings in provinces in the coming months

KwaZulu-Natal 20 June

2014

Sandile Ndlovu 031-334-

Limpopo 26 June

Mavhungu Makatu 011-566-

3429

Western Cape 27 June

Xolile Mateza 021-431-

9804

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 719

9529 SNdlovuicasaorgza MMAkatuicasaorgza XMatezaicasaorgza

Eastern Cape 30 June

Mpho Moletsane 041-394-

1609

MMoletsaneicasaorgza

Mpumalanga 3 July

Mavhungu Makatu 011-566-

3429

MMAkatuicasaorgza

Northern Cape 3 July

Please liaise directly with the contact person in your province with regards venues time

and reasonable accommodation needs

For any other queries or to obtain details for other provinces please contact Lize du

Plessis Consumer Affairs Department Independent Communications Authority of South

Africa (ICASA) Bloemfontein Regional Office Phone (051) 411-5904 Cell phone 073

077 4408 and E-mail lduplessisicasaorgza

SADPD Changes Its Name

Mr Kudakwashe (AK) Dube Chief Executive Officer of the Secretariat of the African

Decade of Persons with Disability (SADPD) issued a press release that the name was

changed to Africa Disability Alliance (ADA) with effect from 11 April 2014 This completes

a few years of planning and consultations aimed at having a clearly defined name that is

short concise and not linked to any timeframe The new name can now be used in all

correspondence legal and other documents

The change was necessitated by the need to shorten the name de-link it from a lsquodecadersquo

timeframe There was a need to adopt a name that communicates the fact that the

organisation is an African broad-based regional technical agency that works through

alliances and networks using a broad range of tools that emanate from the UN AU and

other jurisdictions

ADA is led and managed by people with disabilities The General Assembly and Board

of ADA are comprised of diverse-disability membership of more than twelve continental

organisations and networks in Africa

It is important to note that

1 The registration number and original date of registration remain unchanged

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 819

2 ADA will continue to be a non-profit corporation (NPC) in line with the amended

Companies Act (2008)

3 ADArsquos logos addressesbranding business start date main and ancillary

objectives will reflect the new name but remain the same

The registration of ADA launches a new phase in the development and maturity of the

organisation

The South African Cabinet

Post Minister Deputy Minister(s)

Minister in the Presidency Jeff Radebe Kebby Maphatsoe

Minister of Women in the

PresidencySusan Shabangu

Finance Nhlanhla Nene Mcebisi Jonas

Water and Sanitation Nomvula Mokonyane Pam Tshwete

Communications Faith Muthambi Stella Ndabeni-Abrahams

International Relations and

CooperationMaite Nkoana-Mashabane

Noma-India Mfeketo

Lluwelyn Landers

Police Nkosinathi Nhleko Maggie Sotyu

Public Service and

AdministrationCollins Chabane Ayanda Dlodlo

Human Settlements Lindiwe Sisulu Zoe Kota-Hendricks

Economic Development Ebrahim Patel Madala Masuku

Trade and Industry Rob Davies Mzwandile Masina

Science and Technology Naledi Pandor

Home Affairs Malusi Gigaba Fatima Chohan

Higher Education and

TrainingBlade Nzimande Mduduzi Manana

Energy Tina Joemat-Pettersson Thembi Majola

Justice and Correctional

ServicesMichael Masutha

John Jeffery Thabang

Makwetla

Agriculture Forestry andSenzeni Zokwana Bheki Cele

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 919

Fisheries

Sport and Recreation Fikile Mbalula Gert Oosthuizen

Small Business Development Lindiwe Zulu Elizabeth Thabethe

Mineral Resources Ngoako Ramathlodi Godfrey Oliphant

Cooperative Governance and

Traditional AffairsPravin Gordhan Andries Nel Obed Bapela

Defence and Military

Veterans Nosiviwe Mapisa-Nqakula Kebby Maphatsoe

Environmental Affairs Edna Molewa Barbara Thomson

State Security David Mahlobo Ellen Molekane

Basic Education Angie Motshekga Enver Surty

Rural Development and Land

ReformGugile Nkwinti

Mcebisi Skwatsha Candith

Mashego-Dlamini

Telecommunications and

Postal ServicesSIyabonga Cwele Hlengiwe Mkhize

Transport Dipuo Peters Sindi Chikunga

Social Development Bathabile Dlamini Henrietta Bogopane-Zulu

Public Enterprises Lynne Brown Gratitude Magwanishe

Labour Mildred Oliphant Inkosi Patekile Holomisa

Arts and Culture Nathi Mthethwa Rejoice Mabudafhasi

Public Works Thulas Nxesi Jeremy Cronin

Tourism Derek Hanekom Thokozile Xasa

Health Aaron Motsoaledi Joe Phaahla

National Mental Health Policy Frameword amp Strategic Plan 2013-2020

The National Department of Health publish this document which they claim is a new

mental health system based on primary health care (PHC) principles Read the plan

here

Source SA NCD AlliancePHANGO Newsletter Vol 1 (5)

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1019

New Draft National Disability Policy Changes Focus

The first Draft White Paper relating to the revised National Disability Policy which

introduces the concept of ldquoduty bearersrdquo and charges them with responsibility for

ensuring the implementation of the provisions of the policy is expected to be signed off

by the incoming Minister of Women Children and People with Disabilities in June this

year

It will then be released for public comment following cabinet approval in August and

should hopefully be ready to be launched on 3 December National Day of People with

Disabilities

Thatrsquos according to Lidia Pretorius DWCPWDrsquos Chief Director Monitoring and

Evaluation of the Rights of Persons with Disability who said much of the focus of the new

policy was directed at ensuring the mainstreaming of persons with disabilities in all walks

of life including in the workforce

Speaking at the SAE4D breakfast last month Ms Pretorius said that duty bearers - those

who are in a position to make a difference from captains of industry to government

officials ndash will be deemed to have intentionally discriminated against persons with

disabilities (a criminal offence) if they are unable to provide evidence that they

Acknowledged that there are barriers which exclude persons with

disabilitiesdetract from their access or participation

Identified potential barriers

Put in place measures to minimiseremove barriers

Budgeted for these measures

Can report on progress with implementation

Can measure impact

ldquoWe are moving beyond begging and encouragementrdquo she said ldquoWe want results The

new policy is based on four key pillars Human Right Universal Access Design

Mainstreaming and Self-Representation Its purpose is to ensure equality for people

with disabilitiesrdquo

The new policy is designed to bring the National Disability Policy in line with the

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1119

Governmentrsquos Medium Term Strategic Framework 2014 ndash 2019 and to address the

shortcomings identified in the 2011 Draft Policy which did not fully make provision for its

integration into the government outcomes-based planning approach or the integration of

mainstreaming guidelines

ldquoDisabilityrdquo Ms Pretorius said ldquois not something a person has Disability is imposed by

society when a person with a long-term impairment is denied access to full participation

in all aspects of life and when society fails to uphold the rights and specific needs of

individuals with impairmentsrdquo

In terms of the new policy persons with disabilities will include all those who have long-

term physical psychosocial cognitive andor sensory impairments which in interaction

with various barriers may hinder their full and effective participation in society on an

equal basis with others SAE4D will be participating in consultations with the DWCPD

and monitoring the progress of the new Draft Policy and will keep members informed

about all new developments

Source South African Employers 4 Disability newsletter Issue 2 April 2014

South African NCD Strategic Plan 2013-2017

If you have not yet read the 4-year strategic plan for non-communicable diseases (NCD)

you can download it by clicking here

Source SA NCD AlliancePHANGO Newsletter Vol 1 (5)

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1219

Northern Cape Scoops Local Media Award

Radio Nfm in Namaqualand represented by guiding management member Brunhild

Strauss proudly walked away with top honours by being chosen as the Best Community

Radio Station in South Africa during the Local Media Awards in South Africa The

National Office of Epilepsy South Africa enjoys a long association with Radio Nfm and

Brunhild and congratulates the station on being selected from more than 750 entries

INTERNATIONAL NEWS

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1319

New IBE Members

The IBE recently welcomed two new members

The new member associations are

The Association of Supporting Children with Special Needs (AOSCCS) in Moldova

attained full membership Visit the website wwwasccsmden

The Italian Federation Epilepsies attained associate membership Visit the website

wwwfiepilessieit

This brings the number of IBE Full Members to 98 and Associate Members to 37 IBE is

now represented in 100 countries worldwide

To view the details for each IBE member please choose from the following regions below

View contact details for members in the African region

View contact details for members in the Eastern Mediterranean region

View contact details for members in the European region

View contact details for members in the Latin American regions

View contact details for members in the North American region

View contact details for members in the South East Asian region

View contact details for members in the Western Pacific region

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1419

New York State Considering SUDEP Legislation

The New York legislature is considering legislation (SB 6232 and AB 8444) which would

require the medical certificate portion of a death certificate to include whether the

deceased suffered a sudden unexpected death in epilepsy (SUDEP) Illinois and New

Jersey already have passed similar SUDEP laws Collecting SUDEP data is critical to

improve our understanding of epilepsy related deaths and will allow us to discover risk

factors and ways to prevent it

Source Epilepsy Foundation newsletter 20 May 2014

FACTS CORNER

US Congress Urging HHS to Remove Barriers to Marijuana Research

Representatives Blumenauer Griffith Rohrabacher and Schakowsky are circulating a

letter with their Congressional colleagues urging the Secretary of the Department of

Health and Human Services (HHS) to remove barriers for medical marijuana research

Studies on marijuana must go through extensive review processes beyond what is

required for other Schedule I substances making it harder for research into the

connection between seizures and marijuana to take place

Source Epilepsy Foundation newsletter 20 May 2014

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1519

New Epilepsy Publication

Epilepsy has been found to affect at least 7 out of every 1000 individuals in rural South

Africa according to an Agincourt study published by Ryan Wagner and colleagues in

Epilepsy Research The research led by Professor Charles Newton of the Department

of Psychiatry Oxford University and funded by the Welcome Trust highlights the fact

that epilepsy one of the most common neurological disorders globally is less common in

rural South Africa than other parts of sub-Saharan Africa This research raises a

potential connection between epilepsy and snoring and provides evidence that improving

obstetric services could epilepsy in this context

The full article is available here

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1619

Source httpwwwagincourtcozaindexphp201403new-epilepsy-publication 24

May 2014

WHATS HAPPENING

National Epilepsy Week 2014

Celebrate National Epilepsy Week from 16 to 22 June 2014 with the theme ldquoWho has

epilepsyrdquo This broad theme points out that epilepsy is not physically discernable ndash

anyone can have it at any time Contact the nearest Branch to you by dialling 0860

EPILEPSY

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1719

31st International Epilepsy Congress

The 31st International Epilepsy Congress (IEC) will take place in Istanbul Turkey

between 6 and 10 September 2015

The congress is organised jointly by the International League Against Epilepsy (ILAE)

and the International Bureau for Epilepsy (IBE) The scientific programme of the 31st IEC

promises to be innovative and engaging with a wide range of main and parallel sessions

as well as teaching and video sessions

Research Survey

Do you have epilepsy Are you between the ages of 18-40

If you answered YES to both questions then you may be eligible to participate in a

research project

The purpose of this study is to evaluate the relationships between epilepsy

psychological development and health and epilepsy-related self-management The

survey will take approximately 20-25 minutes and must be completed online Although

you will receive no direct benefit your participation will help us learn more about people

who live with epilepsy which will potentially benefit care providers and people with

epilepsy Some participants may have a sense of satisfaction in knowing that they have

contributed to knowledge about young adults living with epilepsy

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1819

If you are interested in participating please visit the survey website

httpswwwsurveymonkeycoms8ZY9J5G

This study is being conducted as dissertation research by Channing Harris a doctoral

candidate in the School of Psychology at Fielding Graduate University 2020 De la Vina

Street Santa Barbara California 93105-3814 The study is under the supervision of

Joan Read PhD faculty member and Director of Practicum Training at Fielding

Graduate University

Closing date for participation 13 June 2014

If yoursquod like more information contact Channing at

Email gharrisemailfieldingedu

Phone 011-1-805-364-2861

CONTACT US

follow on Twitter | friend on Facebook | forward to a friend

Copyright copy 2014 Epilepsy South Africa All rights reserved

unsubscribe from this list | update subscription preferences

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1919

Page 5: Table of Contents - Epilepsy newsletter... · 077 4408 and E-mail: lduplessis@icasa.org.za SADPD Changes Its Name Mr Kudakwashe (AK) Dube, Chief Executive Officer of the Secretariat

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 519

growth and stability The framework says ldquoIt is not the aim of government to simply write

unreasonably stringent measures that will hamper the growth of the NPO sectorrdquo

One of the striking things about the framework is the acknowledgement of how little is

known about the real size employment conditions salaries and income levels of the NPO

sector in South Africa While the Directorate is able to cite a growth in registrations of

more than 11 percent per annum it acknowledges that the majority of registered

organisations are still non-compliant and that some 80 percent of registered

organisations are voluntary associations

One of the proposals in the framework is for the Directorate to conduct research on the

lsquoincome levels and contribution to the South African economyrsquo of NPOs and make this

available to the public This should be welcomed and encouraged ndash the more we

understand about the South African NPO sector the better we will be able to lobby for

and jointly create enabling policies and practices

Reducing the Burden

A key component of the framework is the recognition of the burden of multiple

registrations and compliance mechanisms on NPOs and particularly that smaller

organisations are often unable to meet the minimum requirements GreaterGood

welcomes the proposal to simplify the registration processes and the assertion that

Trusts Voluntary Associations and Non-profit Companies should be subjected to the

same registration and compliance requirements

We also welcome the move towards electronic registration and faster turnaround times

working with a network of partners offering registration services in areas where Internet

penetration is not as good However we would like to urge the Directorate to investigate

the use of cellphone and USSD solutions which have been very successful at connecting

isolated communities with services in similar economies like Kenya and Nigeria

Size Is Not Everything

Another proposal to be welcomed is the lsquorisk-based approach for monitoring compliancersquo

and the recognition that because of the diversity of the sector the current lsquoone size fits

allrsquo approach is not appropriate However we would caution against the assumption that

the size of an organisation is the key factor in the assessment of risk According to the

framework ldquoThe larger the size and the higher the income levels of the organisationhellip

the more vulnerable and at risk the organisations can berdquo Over the last 10 years that

GreaterGood and GreaterCapital has assessed organisations and conducted project risk

ratings we have found that size and income levels are not necessarily associated with

greater risk There are many factors at play and a solid evidence-based risk

assessment tool should be developed to address this

Self-Regulation

The proposals in this version of the framework cover the concept of self-regulation by

the sector in some detail This is a long way from the first few versions which created

anxiety in the sector in terms of enforcement The fifth version explicitly states ldquothe

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 619

intention is not to create a body that will continually interfere in the affairs of

organisationsrdquo While we welcome the softer approach GreaterGood does have

concerns about what evidence there is of the efficacy of self-regulation There are a

number of good governance initiatives in existence already and disagreement within the

sector about which is the most appropriate We believe there is a need for an

independent unified compliance framework based on accurate information about size

income and expenditure practices and salary benchmarks in the NPO sector

While self-regulation is given recognition in the framework an NPO Tribunal and appeal

mechanism is still proposed to provide a dispute resolution process outside of the costly

and time consuming court process While this could be of great benefit to the sector our

concern is the make-up of the tribunal and the perception of its impartiality

Furthermore we are not sure that the lsquoblacklistingrsquo of organisations (which is still

proposed) is useful While we of course acknowledge that fraud and mismanagement

must be exposed the potential for hasty unfair and prejudicial lsquoblacklistingsrsquo ndash outside of

a judicial process ndash means that the process would have to be very carefully detailed and

followed

GreaterGood and GreaterCapital welcomes the open and consultative nature of the

process for developing this framework and believes that by working collectively the

resultant changes to the NPO Act will be able to meet the needs of our growing and

changing sector

Sophie Hobbs is the head of strategic communication at GreaterGood and

GreaterCapital This article first appeared in the Greater Impact 8 April 2014

Source wwwngopulsecoza 24 April 2014

ICASA Code for People w ith Disabilities

The ICASA Code for People with Disabilities (currently under review) was circulated for

public comment The deadline for comment has come and gone and ICASA will be

holding public hearings in provinces in the coming months

KwaZulu-Natal 20 June

2014

Sandile Ndlovu 031-334-

Limpopo 26 June

Mavhungu Makatu 011-566-

3429

Western Cape 27 June

Xolile Mateza 021-431-

9804

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 719

9529 SNdlovuicasaorgza MMAkatuicasaorgza XMatezaicasaorgza

Eastern Cape 30 June

Mpho Moletsane 041-394-

1609

MMoletsaneicasaorgza

Mpumalanga 3 July

Mavhungu Makatu 011-566-

3429

MMAkatuicasaorgza

Northern Cape 3 July

Please liaise directly with the contact person in your province with regards venues time

and reasonable accommodation needs

For any other queries or to obtain details for other provinces please contact Lize du

Plessis Consumer Affairs Department Independent Communications Authority of South

Africa (ICASA) Bloemfontein Regional Office Phone (051) 411-5904 Cell phone 073

077 4408 and E-mail lduplessisicasaorgza

SADPD Changes Its Name

Mr Kudakwashe (AK) Dube Chief Executive Officer of the Secretariat of the African

Decade of Persons with Disability (SADPD) issued a press release that the name was

changed to Africa Disability Alliance (ADA) with effect from 11 April 2014 This completes

a few years of planning and consultations aimed at having a clearly defined name that is

short concise and not linked to any timeframe The new name can now be used in all

correspondence legal and other documents

The change was necessitated by the need to shorten the name de-link it from a lsquodecadersquo

timeframe There was a need to adopt a name that communicates the fact that the

organisation is an African broad-based regional technical agency that works through

alliances and networks using a broad range of tools that emanate from the UN AU and

other jurisdictions

ADA is led and managed by people with disabilities The General Assembly and Board

of ADA are comprised of diverse-disability membership of more than twelve continental

organisations and networks in Africa

It is important to note that

1 The registration number and original date of registration remain unchanged

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 819

2 ADA will continue to be a non-profit corporation (NPC) in line with the amended

Companies Act (2008)

3 ADArsquos logos addressesbranding business start date main and ancillary

objectives will reflect the new name but remain the same

The registration of ADA launches a new phase in the development and maturity of the

organisation

The South African Cabinet

Post Minister Deputy Minister(s)

Minister in the Presidency Jeff Radebe Kebby Maphatsoe

Minister of Women in the

PresidencySusan Shabangu

Finance Nhlanhla Nene Mcebisi Jonas

Water and Sanitation Nomvula Mokonyane Pam Tshwete

Communications Faith Muthambi Stella Ndabeni-Abrahams

International Relations and

CooperationMaite Nkoana-Mashabane

Noma-India Mfeketo

Lluwelyn Landers

Police Nkosinathi Nhleko Maggie Sotyu

Public Service and

AdministrationCollins Chabane Ayanda Dlodlo

Human Settlements Lindiwe Sisulu Zoe Kota-Hendricks

Economic Development Ebrahim Patel Madala Masuku

Trade and Industry Rob Davies Mzwandile Masina

Science and Technology Naledi Pandor

Home Affairs Malusi Gigaba Fatima Chohan

Higher Education and

TrainingBlade Nzimande Mduduzi Manana

Energy Tina Joemat-Pettersson Thembi Majola

Justice and Correctional

ServicesMichael Masutha

John Jeffery Thabang

Makwetla

Agriculture Forestry andSenzeni Zokwana Bheki Cele

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 919

Fisheries

Sport and Recreation Fikile Mbalula Gert Oosthuizen

Small Business Development Lindiwe Zulu Elizabeth Thabethe

Mineral Resources Ngoako Ramathlodi Godfrey Oliphant

Cooperative Governance and

Traditional AffairsPravin Gordhan Andries Nel Obed Bapela

Defence and Military

Veterans Nosiviwe Mapisa-Nqakula Kebby Maphatsoe

Environmental Affairs Edna Molewa Barbara Thomson

State Security David Mahlobo Ellen Molekane

Basic Education Angie Motshekga Enver Surty

Rural Development and Land

ReformGugile Nkwinti

Mcebisi Skwatsha Candith

Mashego-Dlamini

Telecommunications and

Postal ServicesSIyabonga Cwele Hlengiwe Mkhize

Transport Dipuo Peters Sindi Chikunga

Social Development Bathabile Dlamini Henrietta Bogopane-Zulu

Public Enterprises Lynne Brown Gratitude Magwanishe

Labour Mildred Oliphant Inkosi Patekile Holomisa

Arts and Culture Nathi Mthethwa Rejoice Mabudafhasi

Public Works Thulas Nxesi Jeremy Cronin

Tourism Derek Hanekom Thokozile Xasa

Health Aaron Motsoaledi Joe Phaahla

National Mental Health Policy Frameword amp Strategic Plan 2013-2020

The National Department of Health publish this document which they claim is a new

mental health system based on primary health care (PHC) principles Read the plan

here

Source SA NCD AlliancePHANGO Newsletter Vol 1 (5)

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1019

New Draft National Disability Policy Changes Focus

The first Draft White Paper relating to the revised National Disability Policy which

introduces the concept of ldquoduty bearersrdquo and charges them with responsibility for

ensuring the implementation of the provisions of the policy is expected to be signed off

by the incoming Minister of Women Children and People with Disabilities in June this

year

It will then be released for public comment following cabinet approval in August and

should hopefully be ready to be launched on 3 December National Day of People with

Disabilities

Thatrsquos according to Lidia Pretorius DWCPWDrsquos Chief Director Monitoring and

Evaluation of the Rights of Persons with Disability who said much of the focus of the new

policy was directed at ensuring the mainstreaming of persons with disabilities in all walks

of life including in the workforce

Speaking at the SAE4D breakfast last month Ms Pretorius said that duty bearers - those

who are in a position to make a difference from captains of industry to government

officials ndash will be deemed to have intentionally discriminated against persons with

disabilities (a criminal offence) if they are unable to provide evidence that they

Acknowledged that there are barriers which exclude persons with

disabilitiesdetract from their access or participation

Identified potential barriers

Put in place measures to minimiseremove barriers

Budgeted for these measures

Can report on progress with implementation

Can measure impact

ldquoWe are moving beyond begging and encouragementrdquo she said ldquoWe want results The

new policy is based on four key pillars Human Right Universal Access Design

Mainstreaming and Self-Representation Its purpose is to ensure equality for people

with disabilitiesrdquo

The new policy is designed to bring the National Disability Policy in line with the

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1119

Governmentrsquos Medium Term Strategic Framework 2014 ndash 2019 and to address the

shortcomings identified in the 2011 Draft Policy which did not fully make provision for its

integration into the government outcomes-based planning approach or the integration of

mainstreaming guidelines

ldquoDisabilityrdquo Ms Pretorius said ldquois not something a person has Disability is imposed by

society when a person with a long-term impairment is denied access to full participation

in all aspects of life and when society fails to uphold the rights and specific needs of

individuals with impairmentsrdquo

In terms of the new policy persons with disabilities will include all those who have long-

term physical psychosocial cognitive andor sensory impairments which in interaction

with various barriers may hinder their full and effective participation in society on an

equal basis with others SAE4D will be participating in consultations with the DWCPD

and monitoring the progress of the new Draft Policy and will keep members informed

about all new developments

Source South African Employers 4 Disability newsletter Issue 2 April 2014

South African NCD Strategic Plan 2013-2017

If you have not yet read the 4-year strategic plan for non-communicable diseases (NCD)

you can download it by clicking here

Source SA NCD AlliancePHANGO Newsletter Vol 1 (5)

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1219

Northern Cape Scoops Local Media Award

Radio Nfm in Namaqualand represented by guiding management member Brunhild

Strauss proudly walked away with top honours by being chosen as the Best Community

Radio Station in South Africa during the Local Media Awards in South Africa The

National Office of Epilepsy South Africa enjoys a long association with Radio Nfm and

Brunhild and congratulates the station on being selected from more than 750 entries

INTERNATIONAL NEWS

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1319

New IBE Members

The IBE recently welcomed two new members

The new member associations are

The Association of Supporting Children with Special Needs (AOSCCS) in Moldova

attained full membership Visit the website wwwasccsmden

The Italian Federation Epilepsies attained associate membership Visit the website

wwwfiepilessieit

This brings the number of IBE Full Members to 98 and Associate Members to 37 IBE is

now represented in 100 countries worldwide

To view the details for each IBE member please choose from the following regions below

View contact details for members in the African region

View contact details for members in the Eastern Mediterranean region

View contact details for members in the European region

View contact details for members in the Latin American regions

View contact details for members in the North American region

View contact details for members in the South East Asian region

View contact details for members in the Western Pacific region

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1419

New York State Considering SUDEP Legislation

The New York legislature is considering legislation (SB 6232 and AB 8444) which would

require the medical certificate portion of a death certificate to include whether the

deceased suffered a sudden unexpected death in epilepsy (SUDEP) Illinois and New

Jersey already have passed similar SUDEP laws Collecting SUDEP data is critical to

improve our understanding of epilepsy related deaths and will allow us to discover risk

factors and ways to prevent it

Source Epilepsy Foundation newsletter 20 May 2014

FACTS CORNER

US Congress Urging HHS to Remove Barriers to Marijuana Research

Representatives Blumenauer Griffith Rohrabacher and Schakowsky are circulating a

letter with their Congressional colleagues urging the Secretary of the Department of

Health and Human Services (HHS) to remove barriers for medical marijuana research

Studies on marijuana must go through extensive review processes beyond what is

required for other Schedule I substances making it harder for research into the

connection between seizures and marijuana to take place

Source Epilepsy Foundation newsletter 20 May 2014

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1519

New Epilepsy Publication

Epilepsy has been found to affect at least 7 out of every 1000 individuals in rural South

Africa according to an Agincourt study published by Ryan Wagner and colleagues in

Epilepsy Research The research led by Professor Charles Newton of the Department

of Psychiatry Oxford University and funded by the Welcome Trust highlights the fact

that epilepsy one of the most common neurological disorders globally is less common in

rural South Africa than other parts of sub-Saharan Africa This research raises a

potential connection between epilepsy and snoring and provides evidence that improving

obstetric services could epilepsy in this context

The full article is available here

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1619

Source httpwwwagincourtcozaindexphp201403new-epilepsy-publication 24

May 2014

WHATS HAPPENING

National Epilepsy Week 2014

Celebrate National Epilepsy Week from 16 to 22 June 2014 with the theme ldquoWho has

epilepsyrdquo This broad theme points out that epilepsy is not physically discernable ndash

anyone can have it at any time Contact the nearest Branch to you by dialling 0860

EPILEPSY

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1719

31st International Epilepsy Congress

The 31st International Epilepsy Congress (IEC) will take place in Istanbul Turkey

between 6 and 10 September 2015

The congress is organised jointly by the International League Against Epilepsy (ILAE)

and the International Bureau for Epilepsy (IBE) The scientific programme of the 31st IEC

promises to be innovative and engaging with a wide range of main and parallel sessions

as well as teaching and video sessions

Research Survey

Do you have epilepsy Are you between the ages of 18-40

If you answered YES to both questions then you may be eligible to participate in a

research project

The purpose of this study is to evaluate the relationships between epilepsy

psychological development and health and epilepsy-related self-management The

survey will take approximately 20-25 minutes and must be completed online Although

you will receive no direct benefit your participation will help us learn more about people

who live with epilepsy which will potentially benefit care providers and people with

epilepsy Some participants may have a sense of satisfaction in knowing that they have

contributed to knowledge about young adults living with epilepsy

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1819

If you are interested in participating please visit the survey website

httpswwwsurveymonkeycoms8ZY9J5G

This study is being conducted as dissertation research by Channing Harris a doctoral

candidate in the School of Psychology at Fielding Graduate University 2020 De la Vina

Street Santa Barbara California 93105-3814 The study is under the supervision of

Joan Read PhD faculty member and Director of Practicum Training at Fielding

Graduate University

Closing date for participation 13 June 2014

If yoursquod like more information contact Channing at

Email gharrisemailfieldingedu

Phone 011-1-805-364-2861

CONTACT US

follow on Twitter | friend on Facebook | forward to a friend

Copyright copy 2014 Epilepsy South Africa All rights reserved

unsubscribe from this list | update subscription preferences

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1919

Page 6: Table of Contents - Epilepsy newsletter... · 077 4408 and E-mail: lduplessis@icasa.org.za SADPD Changes Its Name Mr Kudakwashe (AK) Dube, Chief Executive Officer of the Secretariat

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 619

intention is not to create a body that will continually interfere in the affairs of

organisationsrdquo While we welcome the softer approach GreaterGood does have

concerns about what evidence there is of the efficacy of self-regulation There are a

number of good governance initiatives in existence already and disagreement within the

sector about which is the most appropriate We believe there is a need for an

independent unified compliance framework based on accurate information about size

income and expenditure practices and salary benchmarks in the NPO sector

While self-regulation is given recognition in the framework an NPO Tribunal and appeal

mechanism is still proposed to provide a dispute resolution process outside of the costly

and time consuming court process While this could be of great benefit to the sector our

concern is the make-up of the tribunal and the perception of its impartiality

Furthermore we are not sure that the lsquoblacklistingrsquo of organisations (which is still

proposed) is useful While we of course acknowledge that fraud and mismanagement

must be exposed the potential for hasty unfair and prejudicial lsquoblacklistingsrsquo ndash outside of

a judicial process ndash means that the process would have to be very carefully detailed and

followed

GreaterGood and GreaterCapital welcomes the open and consultative nature of the

process for developing this framework and believes that by working collectively the

resultant changes to the NPO Act will be able to meet the needs of our growing and

changing sector

Sophie Hobbs is the head of strategic communication at GreaterGood and

GreaterCapital This article first appeared in the Greater Impact 8 April 2014

Source wwwngopulsecoza 24 April 2014

ICASA Code for People w ith Disabilities

The ICASA Code for People with Disabilities (currently under review) was circulated for

public comment The deadline for comment has come and gone and ICASA will be

holding public hearings in provinces in the coming months

KwaZulu-Natal 20 June

2014

Sandile Ndlovu 031-334-

Limpopo 26 June

Mavhungu Makatu 011-566-

3429

Western Cape 27 June

Xolile Mateza 021-431-

9804

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 719

9529 SNdlovuicasaorgza MMAkatuicasaorgza XMatezaicasaorgza

Eastern Cape 30 June

Mpho Moletsane 041-394-

1609

MMoletsaneicasaorgza

Mpumalanga 3 July

Mavhungu Makatu 011-566-

3429

MMAkatuicasaorgza

Northern Cape 3 July

Please liaise directly with the contact person in your province with regards venues time

and reasonable accommodation needs

For any other queries or to obtain details for other provinces please contact Lize du

Plessis Consumer Affairs Department Independent Communications Authority of South

Africa (ICASA) Bloemfontein Regional Office Phone (051) 411-5904 Cell phone 073

077 4408 and E-mail lduplessisicasaorgza

SADPD Changes Its Name

Mr Kudakwashe (AK) Dube Chief Executive Officer of the Secretariat of the African

Decade of Persons with Disability (SADPD) issued a press release that the name was

changed to Africa Disability Alliance (ADA) with effect from 11 April 2014 This completes

a few years of planning and consultations aimed at having a clearly defined name that is

short concise and not linked to any timeframe The new name can now be used in all

correspondence legal and other documents

The change was necessitated by the need to shorten the name de-link it from a lsquodecadersquo

timeframe There was a need to adopt a name that communicates the fact that the

organisation is an African broad-based regional technical agency that works through

alliances and networks using a broad range of tools that emanate from the UN AU and

other jurisdictions

ADA is led and managed by people with disabilities The General Assembly and Board

of ADA are comprised of diverse-disability membership of more than twelve continental

organisations and networks in Africa

It is important to note that

1 The registration number and original date of registration remain unchanged

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 819

2 ADA will continue to be a non-profit corporation (NPC) in line with the amended

Companies Act (2008)

3 ADArsquos logos addressesbranding business start date main and ancillary

objectives will reflect the new name but remain the same

The registration of ADA launches a new phase in the development and maturity of the

organisation

The South African Cabinet

Post Minister Deputy Minister(s)

Minister in the Presidency Jeff Radebe Kebby Maphatsoe

Minister of Women in the

PresidencySusan Shabangu

Finance Nhlanhla Nene Mcebisi Jonas

Water and Sanitation Nomvula Mokonyane Pam Tshwete

Communications Faith Muthambi Stella Ndabeni-Abrahams

International Relations and

CooperationMaite Nkoana-Mashabane

Noma-India Mfeketo

Lluwelyn Landers

Police Nkosinathi Nhleko Maggie Sotyu

Public Service and

AdministrationCollins Chabane Ayanda Dlodlo

Human Settlements Lindiwe Sisulu Zoe Kota-Hendricks

Economic Development Ebrahim Patel Madala Masuku

Trade and Industry Rob Davies Mzwandile Masina

Science and Technology Naledi Pandor

Home Affairs Malusi Gigaba Fatima Chohan

Higher Education and

TrainingBlade Nzimande Mduduzi Manana

Energy Tina Joemat-Pettersson Thembi Majola

Justice and Correctional

ServicesMichael Masutha

John Jeffery Thabang

Makwetla

Agriculture Forestry andSenzeni Zokwana Bheki Cele

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 919

Fisheries

Sport and Recreation Fikile Mbalula Gert Oosthuizen

Small Business Development Lindiwe Zulu Elizabeth Thabethe

Mineral Resources Ngoako Ramathlodi Godfrey Oliphant

Cooperative Governance and

Traditional AffairsPravin Gordhan Andries Nel Obed Bapela

Defence and Military

Veterans Nosiviwe Mapisa-Nqakula Kebby Maphatsoe

Environmental Affairs Edna Molewa Barbara Thomson

State Security David Mahlobo Ellen Molekane

Basic Education Angie Motshekga Enver Surty

Rural Development and Land

ReformGugile Nkwinti

Mcebisi Skwatsha Candith

Mashego-Dlamini

Telecommunications and

Postal ServicesSIyabonga Cwele Hlengiwe Mkhize

Transport Dipuo Peters Sindi Chikunga

Social Development Bathabile Dlamini Henrietta Bogopane-Zulu

Public Enterprises Lynne Brown Gratitude Magwanishe

Labour Mildred Oliphant Inkosi Patekile Holomisa

Arts and Culture Nathi Mthethwa Rejoice Mabudafhasi

Public Works Thulas Nxesi Jeremy Cronin

Tourism Derek Hanekom Thokozile Xasa

Health Aaron Motsoaledi Joe Phaahla

National Mental Health Policy Frameword amp Strategic Plan 2013-2020

The National Department of Health publish this document which they claim is a new

mental health system based on primary health care (PHC) principles Read the plan

here

Source SA NCD AlliancePHANGO Newsletter Vol 1 (5)

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1019

New Draft National Disability Policy Changes Focus

The first Draft White Paper relating to the revised National Disability Policy which

introduces the concept of ldquoduty bearersrdquo and charges them with responsibility for

ensuring the implementation of the provisions of the policy is expected to be signed off

by the incoming Minister of Women Children and People with Disabilities in June this

year

It will then be released for public comment following cabinet approval in August and

should hopefully be ready to be launched on 3 December National Day of People with

Disabilities

Thatrsquos according to Lidia Pretorius DWCPWDrsquos Chief Director Monitoring and

Evaluation of the Rights of Persons with Disability who said much of the focus of the new

policy was directed at ensuring the mainstreaming of persons with disabilities in all walks

of life including in the workforce

Speaking at the SAE4D breakfast last month Ms Pretorius said that duty bearers - those

who are in a position to make a difference from captains of industry to government

officials ndash will be deemed to have intentionally discriminated against persons with

disabilities (a criminal offence) if they are unable to provide evidence that they

Acknowledged that there are barriers which exclude persons with

disabilitiesdetract from their access or participation

Identified potential barriers

Put in place measures to minimiseremove barriers

Budgeted for these measures

Can report on progress with implementation

Can measure impact

ldquoWe are moving beyond begging and encouragementrdquo she said ldquoWe want results The

new policy is based on four key pillars Human Right Universal Access Design

Mainstreaming and Self-Representation Its purpose is to ensure equality for people

with disabilitiesrdquo

The new policy is designed to bring the National Disability Policy in line with the

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1119

Governmentrsquos Medium Term Strategic Framework 2014 ndash 2019 and to address the

shortcomings identified in the 2011 Draft Policy which did not fully make provision for its

integration into the government outcomes-based planning approach or the integration of

mainstreaming guidelines

ldquoDisabilityrdquo Ms Pretorius said ldquois not something a person has Disability is imposed by

society when a person with a long-term impairment is denied access to full participation

in all aspects of life and when society fails to uphold the rights and specific needs of

individuals with impairmentsrdquo

In terms of the new policy persons with disabilities will include all those who have long-

term physical psychosocial cognitive andor sensory impairments which in interaction

with various barriers may hinder their full and effective participation in society on an

equal basis with others SAE4D will be participating in consultations with the DWCPD

and monitoring the progress of the new Draft Policy and will keep members informed

about all new developments

Source South African Employers 4 Disability newsletter Issue 2 April 2014

South African NCD Strategic Plan 2013-2017

If you have not yet read the 4-year strategic plan for non-communicable diseases (NCD)

you can download it by clicking here

Source SA NCD AlliancePHANGO Newsletter Vol 1 (5)

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1219

Northern Cape Scoops Local Media Award

Radio Nfm in Namaqualand represented by guiding management member Brunhild

Strauss proudly walked away with top honours by being chosen as the Best Community

Radio Station in South Africa during the Local Media Awards in South Africa The

National Office of Epilepsy South Africa enjoys a long association with Radio Nfm and

Brunhild and congratulates the station on being selected from more than 750 entries

INTERNATIONAL NEWS

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1319

New IBE Members

The IBE recently welcomed two new members

The new member associations are

The Association of Supporting Children with Special Needs (AOSCCS) in Moldova

attained full membership Visit the website wwwasccsmden

The Italian Federation Epilepsies attained associate membership Visit the website

wwwfiepilessieit

This brings the number of IBE Full Members to 98 and Associate Members to 37 IBE is

now represented in 100 countries worldwide

To view the details for each IBE member please choose from the following regions below

View contact details for members in the African region

View contact details for members in the Eastern Mediterranean region

View contact details for members in the European region

View contact details for members in the Latin American regions

View contact details for members in the North American region

View contact details for members in the South East Asian region

View contact details for members in the Western Pacific region

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1419

New York State Considering SUDEP Legislation

The New York legislature is considering legislation (SB 6232 and AB 8444) which would

require the medical certificate portion of a death certificate to include whether the

deceased suffered a sudden unexpected death in epilepsy (SUDEP) Illinois and New

Jersey already have passed similar SUDEP laws Collecting SUDEP data is critical to

improve our understanding of epilepsy related deaths and will allow us to discover risk

factors and ways to prevent it

Source Epilepsy Foundation newsletter 20 May 2014

FACTS CORNER

US Congress Urging HHS to Remove Barriers to Marijuana Research

Representatives Blumenauer Griffith Rohrabacher and Schakowsky are circulating a

letter with their Congressional colleagues urging the Secretary of the Department of

Health and Human Services (HHS) to remove barriers for medical marijuana research

Studies on marijuana must go through extensive review processes beyond what is

required for other Schedule I substances making it harder for research into the

connection between seizures and marijuana to take place

Source Epilepsy Foundation newsletter 20 May 2014

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1519

New Epilepsy Publication

Epilepsy has been found to affect at least 7 out of every 1000 individuals in rural South

Africa according to an Agincourt study published by Ryan Wagner and colleagues in

Epilepsy Research The research led by Professor Charles Newton of the Department

of Psychiatry Oxford University and funded by the Welcome Trust highlights the fact

that epilepsy one of the most common neurological disorders globally is less common in

rural South Africa than other parts of sub-Saharan Africa This research raises a

potential connection between epilepsy and snoring and provides evidence that improving

obstetric services could epilepsy in this context

The full article is available here

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1619

Source httpwwwagincourtcozaindexphp201403new-epilepsy-publication 24

May 2014

WHATS HAPPENING

National Epilepsy Week 2014

Celebrate National Epilepsy Week from 16 to 22 June 2014 with the theme ldquoWho has

epilepsyrdquo This broad theme points out that epilepsy is not physically discernable ndash

anyone can have it at any time Contact the nearest Branch to you by dialling 0860

EPILEPSY

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1719

31st International Epilepsy Congress

The 31st International Epilepsy Congress (IEC) will take place in Istanbul Turkey

between 6 and 10 September 2015

The congress is organised jointly by the International League Against Epilepsy (ILAE)

and the International Bureau for Epilepsy (IBE) The scientific programme of the 31st IEC

promises to be innovative and engaging with a wide range of main and parallel sessions

as well as teaching and video sessions

Research Survey

Do you have epilepsy Are you between the ages of 18-40

If you answered YES to both questions then you may be eligible to participate in a

research project

The purpose of this study is to evaluate the relationships between epilepsy

psychological development and health and epilepsy-related self-management The

survey will take approximately 20-25 minutes and must be completed online Although

you will receive no direct benefit your participation will help us learn more about people

who live with epilepsy which will potentially benefit care providers and people with

epilepsy Some participants may have a sense of satisfaction in knowing that they have

contributed to knowledge about young adults living with epilepsy

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1819

If you are interested in participating please visit the survey website

httpswwwsurveymonkeycoms8ZY9J5G

This study is being conducted as dissertation research by Channing Harris a doctoral

candidate in the School of Psychology at Fielding Graduate University 2020 De la Vina

Street Santa Barbara California 93105-3814 The study is under the supervision of

Joan Read PhD faculty member and Director of Practicum Training at Fielding

Graduate University

Closing date for participation 13 June 2014

If yoursquod like more information contact Channing at

Email gharrisemailfieldingedu

Phone 011-1-805-364-2861

CONTACT US

follow on Twitter | friend on Facebook | forward to a friend

Copyright copy 2014 Epilepsy South Africa All rights reserved

unsubscribe from this list | update subscription preferences

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1919

Page 7: Table of Contents - Epilepsy newsletter... · 077 4408 and E-mail: lduplessis@icasa.org.za SADPD Changes Its Name Mr Kudakwashe (AK) Dube, Chief Executive Officer of the Secretariat

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 719

9529 SNdlovuicasaorgza MMAkatuicasaorgza XMatezaicasaorgza

Eastern Cape 30 June

Mpho Moletsane 041-394-

1609

MMoletsaneicasaorgza

Mpumalanga 3 July

Mavhungu Makatu 011-566-

3429

MMAkatuicasaorgza

Northern Cape 3 July

Please liaise directly with the contact person in your province with regards venues time

and reasonable accommodation needs

For any other queries or to obtain details for other provinces please contact Lize du

Plessis Consumer Affairs Department Independent Communications Authority of South

Africa (ICASA) Bloemfontein Regional Office Phone (051) 411-5904 Cell phone 073

077 4408 and E-mail lduplessisicasaorgza

SADPD Changes Its Name

Mr Kudakwashe (AK) Dube Chief Executive Officer of the Secretariat of the African

Decade of Persons with Disability (SADPD) issued a press release that the name was

changed to Africa Disability Alliance (ADA) with effect from 11 April 2014 This completes

a few years of planning and consultations aimed at having a clearly defined name that is

short concise and not linked to any timeframe The new name can now be used in all

correspondence legal and other documents

The change was necessitated by the need to shorten the name de-link it from a lsquodecadersquo

timeframe There was a need to adopt a name that communicates the fact that the

organisation is an African broad-based regional technical agency that works through

alliances and networks using a broad range of tools that emanate from the UN AU and

other jurisdictions

ADA is led and managed by people with disabilities The General Assembly and Board

of ADA are comprised of diverse-disability membership of more than twelve continental

organisations and networks in Africa

It is important to note that

1 The registration number and original date of registration remain unchanged

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 819

2 ADA will continue to be a non-profit corporation (NPC) in line with the amended

Companies Act (2008)

3 ADArsquos logos addressesbranding business start date main and ancillary

objectives will reflect the new name but remain the same

The registration of ADA launches a new phase in the development and maturity of the

organisation

The South African Cabinet

Post Minister Deputy Minister(s)

Minister in the Presidency Jeff Radebe Kebby Maphatsoe

Minister of Women in the

PresidencySusan Shabangu

Finance Nhlanhla Nene Mcebisi Jonas

Water and Sanitation Nomvula Mokonyane Pam Tshwete

Communications Faith Muthambi Stella Ndabeni-Abrahams

International Relations and

CooperationMaite Nkoana-Mashabane

Noma-India Mfeketo

Lluwelyn Landers

Police Nkosinathi Nhleko Maggie Sotyu

Public Service and

AdministrationCollins Chabane Ayanda Dlodlo

Human Settlements Lindiwe Sisulu Zoe Kota-Hendricks

Economic Development Ebrahim Patel Madala Masuku

Trade and Industry Rob Davies Mzwandile Masina

Science and Technology Naledi Pandor

Home Affairs Malusi Gigaba Fatima Chohan

Higher Education and

TrainingBlade Nzimande Mduduzi Manana

Energy Tina Joemat-Pettersson Thembi Majola

Justice and Correctional

ServicesMichael Masutha

John Jeffery Thabang

Makwetla

Agriculture Forestry andSenzeni Zokwana Bheki Cele

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 919

Fisheries

Sport and Recreation Fikile Mbalula Gert Oosthuizen

Small Business Development Lindiwe Zulu Elizabeth Thabethe

Mineral Resources Ngoako Ramathlodi Godfrey Oliphant

Cooperative Governance and

Traditional AffairsPravin Gordhan Andries Nel Obed Bapela

Defence and Military

Veterans Nosiviwe Mapisa-Nqakula Kebby Maphatsoe

Environmental Affairs Edna Molewa Barbara Thomson

State Security David Mahlobo Ellen Molekane

Basic Education Angie Motshekga Enver Surty

Rural Development and Land

ReformGugile Nkwinti

Mcebisi Skwatsha Candith

Mashego-Dlamini

Telecommunications and

Postal ServicesSIyabonga Cwele Hlengiwe Mkhize

Transport Dipuo Peters Sindi Chikunga

Social Development Bathabile Dlamini Henrietta Bogopane-Zulu

Public Enterprises Lynne Brown Gratitude Magwanishe

Labour Mildred Oliphant Inkosi Patekile Holomisa

Arts and Culture Nathi Mthethwa Rejoice Mabudafhasi

Public Works Thulas Nxesi Jeremy Cronin

Tourism Derek Hanekom Thokozile Xasa

Health Aaron Motsoaledi Joe Phaahla

National Mental Health Policy Frameword amp Strategic Plan 2013-2020

The National Department of Health publish this document which they claim is a new

mental health system based on primary health care (PHC) principles Read the plan

here

Source SA NCD AlliancePHANGO Newsletter Vol 1 (5)

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1019

New Draft National Disability Policy Changes Focus

The first Draft White Paper relating to the revised National Disability Policy which

introduces the concept of ldquoduty bearersrdquo and charges them with responsibility for

ensuring the implementation of the provisions of the policy is expected to be signed off

by the incoming Minister of Women Children and People with Disabilities in June this

year

It will then be released for public comment following cabinet approval in August and

should hopefully be ready to be launched on 3 December National Day of People with

Disabilities

Thatrsquos according to Lidia Pretorius DWCPWDrsquos Chief Director Monitoring and

Evaluation of the Rights of Persons with Disability who said much of the focus of the new

policy was directed at ensuring the mainstreaming of persons with disabilities in all walks

of life including in the workforce

Speaking at the SAE4D breakfast last month Ms Pretorius said that duty bearers - those

who are in a position to make a difference from captains of industry to government

officials ndash will be deemed to have intentionally discriminated against persons with

disabilities (a criminal offence) if they are unable to provide evidence that they

Acknowledged that there are barriers which exclude persons with

disabilitiesdetract from their access or participation

Identified potential barriers

Put in place measures to minimiseremove barriers

Budgeted for these measures

Can report on progress with implementation

Can measure impact

ldquoWe are moving beyond begging and encouragementrdquo she said ldquoWe want results The

new policy is based on four key pillars Human Right Universal Access Design

Mainstreaming and Self-Representation Its purpose is to ensure equality for people

with disabilitiesrdquo

The new policy is designed to bring the National Disability Policy in line with the

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1119

Governmentrsquos Medium Term Strategic Framework 2014 ndash 2019 and to address the

shortcomings identified in the 2011 Draft Policy which did not fully make provision for its

integration into the government outcomes-based planning approach or the integration of

mainstreaming guidelines

ldquoDisabilityrdquo Ms Pretorius said ldquois not something a person has Disability is imposed by

society when a person with a long-term impairment is denied access to full participation

in all aspects of life and when society fails to uphold the rights and specific needs of

individuals with impairmentsrdquo

In terms of the new policy persons with disabilities will include all those who have long-

term physical psychosocial cognitive andor sensory impairments which in interaction

with various barriers may hinder their full and effective participation in society on an

equal basis with others SAE4D will be participating in consultations with the DWCPD

and monitoring the progress of the new Draft Policy and will keep members informed

about all new developments

Source South African Employers 4 Disability newsletter Issue 2 April 2014

South African NCD Strategic Plan 2013-2017

If you have not yet read the 4-year strategic plan for non-communicable diseases (NCD)

you can download it by clicking here

Source SA NCD AlliancePHANGO Newsletter Vol 1 (5)

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1219

Northern Cape Scoops Local Media Award

Radio Nfm in Namaqualand represented by guiding management member Brunhild

Strauss proudly walked away with top honours by being chosen as the Best Community

Radio Station in South Africa during the Local Media Awards in South Africa The

National Office of Epilepsy South Africa enjoys a long association with Radio Nfm and

Brunhild and congratulates the station on being selected from more than 750 entries

INTERNATIONAL NEWS

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1319

New IBE Members

The IBE recently welcomed two new members

The new member associations are

The Association of Supporting Children with Special Needs (AOSCCS) in Moldova

attained full membership Visit the website wwwasccsmden

The Italian Federation Epilepsies attained associate membership Visit the website

wwwfiepilessieit

This brings the number of IBE Full Members to 98 and Associate Members to 37 IBE is

now represented in 100 countries worldwide

To view the details for each IBE member please choose from the following regions below

View contact details for members in the African region

View contact details for members in the Eastern Mediterranean region

View contact details for members in the European region

View contact details for members in the Latin American regions

View contact details for members in the North American region

View contact details for members in the South East Asian region

View contact details for members in the Western Pacific region

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1419

New York State Considering SUDEP Legislation

The New York legislature is considering legislation (SB 6232 and AB 8444) which would

require the medical certificate portion of a death certificate to include whether the

deceased suffered a sudden unexpected death in epilepsy (SUDEP) Illinois and New

Jersey already have passed similar SUDEP laws Collecting SUDEP data is critical to

improve our understanding of epilepsy related deaths and will allow us to discover risk

factors and ways to prevent it

Source Epilepsy Foundation newsletter 20 May 2014

FACTS CORNER

US Congress Urging HHS to Remove Barriers to Marijuana Research

Representatives Blumenauer Griffith Rohrabacher and Schakowsky are circulating a

letter with their Congressional colleagues urging the Secretary of the Department of

Health and Human Services (HHS) to remove barriers for medical marijuana research

Studies on marijuana must go through extensive review processes beyond what is

required for other Schedule I substances making it harder for research into the

connection between seizures and marijuana to take place

Source Epilepsy Foundation newsletter 20 May 2014

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1519

New Epilepsy Publication

Epilepsy has been found to affect at least 7 out of every 1000 individuals in rural South

Africa according to an Agincourt study published by Ryan Wagner and colleagues in

Epilepsy Research The research led by Professor Charles Newton of the Department

of Psychiatry Oxford University and funded by the Welcome Trust highlights the fact

that epilepsy one of the most common neurological disorders globally is less common in

rural South Africa than other parts of sub-Saharan Africa This research raises a

potential connection between epilepsy and snoring and provides evidence that improving

obstetric services could epilepsy in this context

The full article is available here

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1619

Source httpwwwagincourtcozaindexphp201403new-epilepsy-publication 24

May 2014

WHATS HAPPENING

National Epilepsy Week 2014

Celebrate National Epilepsy Week from 16 to 22 June 2014 with the theme ldquoWho has

epilepsyrdquo This broad theme points out that epilepsy is not physically discernable ndash

anyone can have it at any time Contact the nearest Branch to you by dialling 0860

EPILEPSY

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1719

31st International Epilepsy Congress

The 31st International Epilepsy Congress (IEC) will take place in Istanbul Turkey

between 6 and 10 September 2015

The congress is organised jointly by the International League Against Epilepsy (ILAE)

and the International Bureau for Epilepsy (IBE) The scientific programme of the 31st IEC

promises to be innovative and engaging with a wide range of main and parallel sessions

as well as teaching and video sessions

Research Survey

Do you have epilepsy Are you between the ages of 18-40

If you answered YES to both questions then you may be eligible to participate in a

research project

The purpose of this study is to evaluate the relationships between epilepsy

psychological development and health and epilepsy-related self-management The

survey will take approximately 20-25 minutes and must be completed online Although

you will receive no direct benefit your participation will help us learn more about people

who live with epilepsy which will potentially benefit care providers and people with

epilepsy Some participants may have a sense of satisfaction in knowing that they have

contributed to knowledge about young adults living with epilepsy

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1819

If you are interested in participating please visit the survey website

httpswwwsurveymonkeycoms8ZY9J5G

This study is being conducted as dissertation research by Channing Harris a doctoral

candidate in the School of Psychology at Fielding Graduate University 2020 De la Vina

Street Santa Barbara California 93105-3814 The study is under the supervision of

Joan Read PhD faculty member and Director of Practicum Training at Fielding

Graduate University

Closing date for participation 13 June 2014

If yoursquod like more information contact Channing at

Email gharrisemailfieldingedu

Phone 011-1-805-364-2861

CONTACT US

follow on Twitter | friend on Facebook | forward to a friend

Copyright copy 2014 Epilepsy South Africa All rights reserved

unsubscribe from this list | update subscription preferences

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1919

Page 8: Table of Contents - Epilepsy newsletter... · 077 4408 and E-mail: lduplessis@icasa.org.za SADPD Changes Its Name Mr Kudakwashe (AK) Dube, Chief Executive Officer of the Secretariat

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 819

2 ADA will continue to be a non-profit corporation (NPC) in line with the amended

Companies Act (2008)

3 ADArsquos logos addressesbranding business start date main and ancillary

objectives will reflect the new name but remain the same

The registration of ADA launches a new phase in the development and maturity of the

organisation

The South African Cabinet

Post Minister Deputy Minister(s)

Minister in the Presidency Jeff Radebe Kebby Maphatsoe

Minister of Women in the

PresidencySusan Shabangu

Finance Nhlanhla Nene Mcebisi Jonas

Water and Sanitation Nomvula Mokonyane Pam Tshwete

Communications Faith Muthambi Stella Ndabeni-Abrahams

International Relations and

CooperationMaite Nkoana-Mashabane

Noma-India Mfeketo

Lluwelyn Landers

Police Nkosinathi Nhleko Maggie Sotyu

Public Service and

AdministrationCollins Chabane Ayanda Dlodlo

Human Settlements Lindiwe Sisulu Zoe Kota-Hendricks

Economic Development Ebrahim Patel Madala Masuku

Trade and Industry Rob Davies Mzwandile Masina

Science and Technology Naledi Pandor

Home Affairs Malusi Gigaba Fatima Chohan

Higher Education and

TrainingBlade Nzimande Mduduzi Manana

Energy Tina Joemat-Pettersson Thembi Majola

Justice and Correctional

ServicesMichael Masutha

John Jeffery Thabang

Makwetla

Agriculture Forestry andSenzeni Zokwana Bheki Cele

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 919

Fisheries

Sport and Recreation Fikile Mbalula Gert Oosthuizen

Small Business Development Lindiwe Zulu Elizabeth Thabethe

Mineral Resources Ngoako Ramathlodi Godfrey Oliphant

Cooperative Governance and

Traditional AffairsPravin Gordhan Andries Nel Obed Bapela

Defence and Military

Veterans Nosiviwe Mapisa-Nqakula Kebby Maphatsoe

Environmental Affairs Edna Molewa Barbara Thomson

State Security David Mahlobo Ellen Molekane

Basic Education Angie Motshekga Enver Surty

Rural Development and Land

ReformGugile Nkwinti

Mcebisi Skwatsha Candith

Mashego-Dlamini

Telecommunications and

Postal ServicesSIyabonga Cwele Hlengiwe Mkhize

Transport Dipuo Peters Sindi Chikunga

Social Development Bathabile Dlamini Henrietta Bogopane-Zulu

Public Enterprises Lynne Brown Gratitude Magwanishe

Labour Mildred Oliphant Inkosi Patekile Holomisa

Arts and Culture Nathi Mthethwa Rejoice Mabudafhasi

Public Works Thulas Nxesi Jeremy Cronin

Tourism Derek Hanekom Thokozile Xasa

Health Aaron Motsoaledi Joe Phaahla

National Mental Health Policy Frameword amp Strategic Plan 2013-2020

The National Department of Health publish this document which they claim is a new

mental health system based on primary health care (PHC) principles Read the plan

here

Source SA NCD AlliancePHANGO Newsletter Vol 1 (5)

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1019

New Draft National Disability Policy Changes Focus

The first Draft White Paper relating to the revised National Disability Policy which

introduces the concept of ldquoduty bearersrdquo and charges them with responsibility for

ensuring the implementation of the provisions of the policy is expected to be signed off

by the incoming Minister of Women Children and People with Disabilities in June this

year

It will then be released for public comment following cabinet approval in August and

should hopefully be ready to be launched on 3 December National Day of People with

Disabilities

Thatrsquos according to Lidia Pretorius DWCPWDrsquos Chief Director Monitoring and

Evaluation of the Rights of Persons with Disability who said much of the focus of the new

policy was directed at ensuring the mainstreaming of persons with disabilities in all walks

of life including in the workforce

Speaking at the SAE4D breakfast last month Ms Pretorius said that duty bearers - those

who are in a position to make a difference from captains of industry to government

officials ndash will be deemed to have intentionally discriminated against persons with

disabilities (a criminal offence) if they are unable to provide evidence that they

Acknowledged that there are barriers which exclude persons with

disabilitiesdetract from their access or participation

Identified potential barriers

Put in place measures to minimiseremove barriers

Budgeted for these measures

Can report on progress with implementation

Can measure impact

ldquoWe are moving beyond begging and encouragementrdquo she said ldquoWe want results The

new policy is based on four key pillars Human Right Universal Access Design

Mainstreaming and Self-Representation Its purpose is to ensure equality for people

with disabilitiesrdquo

The new policy is designed to bring the National Disability Policy in line with the

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1119

Governmentrsquos Medium Term Strategic Framework 2014 ndash 2019 and to address the

shortcomings identified in the 2011 Draft Policy which did not fully make provision for its

integration into the government outcomes-based planning approach or the integration of

mainstreaming guidelines

ldquoDisabilityrdquo Ms Pretorius said ldquois not something a person has Disability is imposed by

society when a person with a long-term impairment is denied access to full participation

in all aspects of life and when society fails to uphold the rights and specific needs of

individuals with impairmentsrdquo

In terms of the new policy persons with disabilities will include all those who have long-

term physical psychosocial cognitive andor sensory impairments which in interaction

with various barriers may hinder their full and effective participation in society on an

equal basis with others SAE4D will be participating in consultations with the DWCPD

and monitoring the progress of the new Draft Policy and will keep members informed

about all new developments

Source South African Employers 4 Disability newsletter Issue 2 April 2014

South African NCD Strategic Plan 2013-2017

If you have not yet read the 4-year strategic plan for non-communicable diseases (NCD)

you can download it by clicking here

Source SA NCD AlliancePHANGO Newsletter Vol 1 (5)

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1219

Northern Cape Scoops Local Media Award

Radio Nfm in Namaqualand represented by guiding management member Brunhild

Strauss proudly walked away with top honours by being chosen as the Best Community

Radio Station in South Africa during the Local Media Awards in South Africa The

National Office of Epilepsy South Africa enjoys a long association with Radio Nfm and

Brunhild and congratulates the station on being selected from more than 750 entries

INTERNATIONAL NEWS

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1319

New IBE Members

The IBE recently welcomed two new members

The new member associations are

The Association of Supporting Children with Special Needs (AOSCCS) in Moldova

attained full membership Visit the website wwwasccsmden

The Italian Federation Epilepsies attained associate membership Visit the website

wwwfiepilessieit

This brings the number of IBE Full Members to 98 and Associate Members to 37 IBE is

now represented in 100 countries worldwide

To view the details for each IBE member please choose from the following regions below

View contact details for members in the African region

View contact details for members in the Eastern Mediterranean region

View contact details for members in the European region

View contact details for members in the Latin American regions

View contact details for members in the North American region

View contact details for members in the South East Asian region

View contact details for members in the Western Pacific region

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1419

New York State Considering SUDEP Legislation

The New York legislature is considering legislation (SB 6232 and AB 8444) which would

require the medical certificate portion of a death certificate to include whether the

deceased suffered a sudden unexpected death in epilepsy (SUDEP) Illinois and New

Jersey already have passed similar SUDEP laws Collecting SUDEP data is critical to

improve our understanding of epilepsy related deaths and will allow us to discover risk

factors and ways to prevent it

Source Epilepsy Foundation newsletter 20 May 2014

FACTS CORNER

US Congress Urging HHS to Remove Barriers to Marijuana Research

Representatives Blumenauer Griffith Rohrabacher and Schakowsky are circulating a

letter with their Congressional colleagues urging the Secretary of the Department of

Health and Human Services (HHS) to remove barriers for medical marijuana research

Studies on marijuana must go through extensive review processes beyond what is

required for other Schedule I substances making it harder for research into the

connection between seizures and marijuana to take place

Source Epilepsy Foundation newsletter 20 May 2014

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1519

New Epilepsy Publication

Epilepsy has been found to affect at least 7 out of every 1000 individuals in rural South

Africa according to an Agincourt study published by Ryan Wagner and colleagues in

Epilepsy Research The research led by Professor Charles Newton of the Department

of Psychiatry Oxford University and funded by the Welcome Trust highlights the fact

that epilepsy one of the most common neurological disorders globally is less common in

rural South Africa than other parts of sub-Saharan Africa This research raises a

potential connection between epilepsy and snoring and provides evidence that improving

obstetric services could epilepsy in this context

The full article is available here

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1619

Source httpwwwagincourtcozaindexphp201403new-epilepsy-publication 24

May 2014

WHATS HAPPENING

National Epilepsy Week 2014

Celebrate National Epilepsy Week from 16 to 22 June 2014 with the theme ldquoWho has

epilepsyrdquo This broad theme points out that epilepsy is not physically discernable ndash

anyone can have it at any time Contact the nearest Branch to you by dialling 0860

EPILEPSY

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1719

31st International Epilepsy Congress

The 31st International Epilepsy Congress (IEC) will take place in Istanbul Turkey

between 6 and 10 September 2015

The congress is organised jointly by the International League Against Epilepsy (ILAE)

and the International Bureau for Epilepsy (IBE) The scientific programme of the 31st IEC

promises to be innovative and engaging with a wide range of main and parallel sessions

as well as teaching and video sessions

Research Survey

Do you have epilepsy Are you between the ages of 18-40

If you answered YES to both questions then you may be eligible to participate in a

research project

The purpose of this study is to evaluate the relationships between epilepsy

psychological development and health and epilepsy-related self-management The

survey will take approximately 20-25 minutes and must be completed online Although

you will receive no direct benefit your participation will help us learn more about people

who live with epilepsy which will potentially benefit care providers and people with

epilepsy Some participants may have a sense of satisfaction in knowing that they have

contributed to knowledge about young adults living with epilepsy

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1819

If you are interested in participating please visit the survey website

httpswwwsurveymonkeycoms8ZY9J5G

This study is being conducted as dissertation research by Channing Harris a doctoral

candidate in the School of Psychology at Fielding Graduate University 2020 De la Vina

Street Santa Barbara California 93105-3814 The study is under the supervision of

Joan Read PhD faculty member and Director of Practicum Training at Fielding

Graduate University

Closing date for participation 13 June 2014

If yoursquod like more information contact Channing at

Email gharrisemailfieldingedu

Phone 011-1-805-364-2861

CONTACT US

follow on Twitter | friend on Facebook | forward to a friend

Copyright copy 2014 Epilepsy South Africa All rights reserved

unsubscribe from this list | update subscription preferences

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1919

Page 9: Table of Contents - Epilepsy newsletter... · 077 4408 and E-mail: lduplessis@icasa.org.za SADPD Changes Its Name Mr Kudakwashe (AK) Dube, Chief Executive Officer of the Secretariat

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 919

Fisheries

Sport and Recreation Fikile Mbalula Gert Oosthuizen

Small Business Development Lindiwe Zulu Elizabeth Thabethe

Mineral Resources Ngoako Ramathlodi Godfrey Oliphant

Cooperative Governance and

Traditional AffairsPravin Gordhan Andries Nel Obed Bapela

Defence and Military

Veterans Nosiviwe Mapisa-Nqakula Kebby Maphatsoe

Environmental Affairs Edna Molewa Barbara Thomson

State Security David Mahlobo Ellen Molekane

Basic Education Angie Motshekga Enver Surty

Rural Development and Land

ReformGugile Nkwinti

Mcebisi Skwatsha Candith

Mashego-Dlamini

Telecommunications and

Postal ServicesSIyabonga Cwele Hlengiwe Mkhize

Transport Dipuo Peters Sindi Chikunga

Social Development Bathabile Dlamini Henrietta Bogopane-Zulu

Public Enterprises Lynne Brown Gratitude Magwanishe

Labour Mildred Oliphant Inkosi Patekile Holomisa

Arts and Culture Nathi Mthethwa Rejoice Mabudafhasi

Public Works Thulas Nxesi Jeremy Cronin

Tourism Derek Hanekom Thokozile Xasa

Health Aaron Motsoaledi Joe Phaahla

National Mental Health Policy Frameword amp Strategic Plan 2013-2020

The National Department of Health publish this document which they claim is a new

mental health system based on primary health care (PHC) principles Read the plan

here

Source SA NCD AlliancePHANGO Newsletter Vol 1 (5)

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1019

New Draft National Disability Policy Changes Focus

The first Draft White Paper relating to the revised National Disability Policy which

introduces the concept of ldquoduty bearersrdquo and charges them with responsibility for

ensuring the implementation of the provisions of the policy is expected to be signed off

by the incoming Minister of Women Children and People with Disabilities in June this

year

It will then be released for public comment following cabinet approval in August and

should hopefully be ready to be launched on 3 December National Day of People with

Disabilities

Thatrsquos according to Lidia Pretorius DWCPWDrsquos Chief Director Monitoring and

Evaluation of the Rights of Persons with Disability who said much of the focus of the new

policy was directed at ensuring the mainstreaming of persons with disabilities in all walks

of life including in the workforce

Speaking at the SAE4D breakfast last month Ms Pretorius said that duty bearers - those

who are in a position to make a difference from captains of industry to government

officials ndash will be deemed to have intentionally discriminated against persons with

disabilities (a criminal offence) if they are unable to provide evidence that they

Acknowledged that there are barriers which exclude persons with

disabilitiesdetract from their access or participation

Identified potential barriers

Put in place measures to minimiseremove barriers

Budgeted for these measures

Can report on progress with implementation

Can measure impact

ldquoWe are moving beyond begging and encouragementrdquo she said ldquoWe want results The

new policy is based on four key pillars Human Right Universal Access Design

Mainstreaming and Self-Representation Its purpose is to ensure equality for people

with disabilitiesrdquo

The new policy is designed to bring the National Disability Policy in line with the

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1119

Governmentrsquos Medium Term Strategic Framework 2014 ndash 2019 and to address the

shortcomings identified in the 2011 Draft Policy which did not fully make provision for its

integration into the government outcomes-based planning approach or the integration of

mainstreaming guidelines

ldquoDisabilityrdquo Ms Pretorius said ldquois not something a person has Disability is imposed by

society when a person with a long-term impairment is denied access to full participation

in all aspects of life and when society fails to uphold the rights and specific needs of

individuals with impairmentsrdquo

In terms of the new policy persons with disabilities will include all those who have long-

term physical psychosocial cognitive andor sensory impairments which in interaction

with various barriers may hinder their full and effective participation in society on an

equal basis with others SAE4D will be participating in consultations with the DWCPD

and monitoring the progress of the new Draft Policy and will keep members informed

about all new developments

Source South African Employers 4 Disability newsletter Issue 2 April 2014

South African NCD Strategic Plan 2013-2017

If you have not yet read the 4-year strategic plan for non-communicable diseases (NCD)

you can download it by clicking here

Source SA NCD AlliancePHANGO Newsletter Vol 1 (5)

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1219

Northern Cape Scoops Local Media Award

Radio Nfm in Namaqualand represented by guiding management member Brunhild

Strauss proudly walked away with top honours by being chosen as the Best Community

Radio Station in South Africa during the Local Media Awards in South Africa The

National Office of Epilepsy South Africa enjoys a long association with Radio Nfm and

Brunhild and congratulates the station on being selected from more than 750 entries

INTERNATIONAL NEWS

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1319

New IBE Members

The IBE recently welcomed two new members

The new member associations are

The Association of Supporting Children with Special Needs (AOSCCS) in Moldova

attained full membership Visit the website wwwasccsmden

The Italian Federation Epilepsies attained associate membership Visit the website

wwwfiepilessieit

This brings the number of IBE Full Members to 98 and Associate Members to 37 IBE is

now represented in 100 countries worldwide

To view the details for each IBE member please choose from the following regions below

View contact details for members in the African region

View contact details for members in the Eastern Mediterranean region

View contact details for members in the European region

View contact details for members in the Latin American regions

View contact details for members in the North American region

View contact details for members in the South East Asian region

View contact details for members in the Western Pacific region

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1419

New York State Considering SUDEP Legislation

The New York legislature is considering legislation (SB 6232 and AB 8444) which would

require the medical certificate portion of a death certificate to include whether the

deceased suffered a sudden unexpected death in epilepsy (SUDEP) Illinois and New

Jersey already have passed similar SUDEP laws Collecting SUDEP data is critical to

improve our understanding of epilepsy related deaths and will allow us to discover risk

factors and ways to prevent it

Source Epilepsy Foundation newsletter 20 May 2014

FACTS CORNER

US Congress Urging HHS to Remove Barriers to Marijuana Research

Representatives Blumenauer Griffith Rohrabacher and Schakowsky are circulating a

letter with their Congressional colleagues urging the Secretary of the Department of

Health and Human Services (HHS) to remove barriers for medical marijuana research

Studies on marijuana must go through extensive review processes beyond what is

required for other Schedule I substances making it harder for research into the

connection between seizures and marijuana to take place

Source Epilepsy Foundation newsletter 20 May 2014

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1519

New Epilepsy Publication

Epilepsy has been found to affect at least 7 out of every 1000 individuals in rural South

Africa according to an Agincourt study published by Ryan Wagner and colleagues in

Epilepsy Research The research led by Professor Charles Newton of the Department

of Psychiatry Oxford University and funded by the Welcome Trust highlights the fact

that epilepsy one of the most common neurological disorders globally is less common in

rural South Africa than other parts of sub-Saharan Africa This research raises a

potential connection between epilepsy and snoring and provides evidence that improving

obstetric services could epilepsy in this context

The full article is available here

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1619

Source httpwwwagincourtcozaindexphp201403new-epilepsy-publication 24

May 2014

WHATS HAPPENING

National Epilepsy Week 2014

Celebrate National Epilepsy Week from 16 to 22 June 2014 with the theme ldquoWho has

epilepsyrdquo This broad theme points out that epilepsy is not physically discernable ndash

anyone can have it at any time Contact the nearest Branch to you by dialling 0860

EPILEPSY

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1719

31st International Epilepsy Congress

The 31st International Epilepsy Congress (IEC) will take place in Istanbul Turkey

between 6 and 10 September 2015

The congress is organised jointly by the International League Against Epilepsy (ILAE)

and the International Bureau for Epilepsy (IBE) The scientific programme of the 31st IEC

promises to be innovative and engaging with a wide range of main and parallel sessions

as well as teaching and video sessions

Research Survey

Do you have epilepsy Are you between the ages of 18-40

If you answered YES to both questions then you may be eligible to participate in a

research project

The purpose of this study is to evaluate the relationships between epilepsy

psychological development and health and epilepsy-related self-management The

survey will take approximately 20-25 minutes and must be completed online Although

you will receive no direct benefit your participation will help us learn more about people

who live with epilepsy which will potentially benefit care providers and people with

epilepsy Some participants may have a sense of satisfaction in knowing that they have

contributed to knowledge about young adults living with epilepsy

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1819

If you are interested in participating please visit the survey website

httpswwwsurveymonkeycoms8ZY9J5G

This study is being conducted as dissertation research by Channing Harris a doctoral

candidate in the School of Psychology at Fielding Graduate University 2020 De la Vina

Street Santa Barbara California 93105-3814 The study is under the supervision of

Joan Read PhD faculty member and Director of Practicum Training at Fielding

Graduate University

Closing date for participation 13 June 2014

If yoursquod like more information contact Channing at

Email gharrisemailfieldingedu

Phone 011-1-805-364-2861

CONTACT US

follow on Twitter | friend on Facebook | forward to a friend

Copyright copy 2014 Epilepsy South Africa All rights reserved

unsubscribe from this list | update subscription preferences

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1919

Page 10: Table of Contents - Epilepsy newsletter... · 077 4408 and E-mail: lduplessis@icasa.org.za SADPD Changes Its Name Mr Kudakwashe (AK) Dube, Chief Executive Officer of the Secretariat

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1019

New Draft National Disability Policy Changes Focus

The first Draft White Paper relating to the revised National Disability Policy which

introduces the concept of ldquoduty bearersrdquo and charges them with responsibility for

ensuring the implementation of the provisions of the policy is expected to be signed off

by the incoming Minister of Women Children and People with Disabilities in June this

year

It will then be released for public comment following cabinet approval in August and

should hopefully be ready to be launched on 3 December National Day of People with

Disabilities

Thatrsquos according to Lidia Pretorius DWCPWDrsquos Chief Director Monitoring and

Evaluation of the Rights of Persons with Disability who said much of the focus of the new

policy was directed at ensuring the mainstreaming of persons with disabilities in all walks

of life including in the workforce

Speaking at the SAE4D breakfast last month Ms Pretorius said that duty bearers - those

who are in a position to make a difference from captains of industry to government

officials ndash will be deemed to have intentionally discriminated against persons with

disabilities (a criminal offence) if they are unable to provide evidence that they

Acknowledged that there are barriers which exclude persons with

disabilitiesdetract from their access or participation

Identified potential barriers

Put in place measures to minimiseremove barriers

Budgeted for these measures

Can report on progress with implementation

Can measure impact

ldquoWe are moving beyond begging and encouragementrdquo she said ldquoWe want results The

new policy is based on four key pillars Human Right Universal Access Design

Mainstreaming and Self-Representation Its purpose is to ensure equality for people

with disabilitiesrdquo

The new policy is designed to bring the National Disability Policy in line with the

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1119

Governmentrsquos Medium Term Strategic Framework 2014 ndash 2019 and to address the

shortcomings identified in the 2011 Draft Policy which did not fully make provision for its

integration into the government outcomes-based planning approach or the integration of

mainstreaming guidelines

ldquoDisabilityrdquo Ms Pretorius said ldquois not something a person has Disability is imposed by

society when a person with a long-term impairment is denied access to full participation

in all aspects of life and when society fails to uphold the rights and specific needs of

individuals with impairmentsrdquo

In terms of the new policy persons with disabilities will include all those who have long-

term physical psychosocial cognitive andor sensory impairments which in interaction

with various barriers may hinder their full and effective participation in society on an

equal basis with others SAE4D will be participating in consultations with the DWCPD

and monitoring the progress of the new Draft Policy and will keep members informed

about all new developments

Source South African Employers 4 Disability newsletter Issue 2 April 2014

South African NCD Strategic Plan 2013-2017

If you have not yet read the 4-year strategic plan for non-communicable diseases (NCD)

you can download it by clicking here

Source SA NCD AlliancePHANGO Newsletter Vol 1 (5)

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1219

Northern Cape Scoops Local Media Award

Radio Nfm in Namaqualand represented by guiding management member Brunhild

Strauss proudly walked away with top honours by being chosen as the Best Community

Radio Station in South Africa during the Local Media Awards in South Africa The

National Office of Epilepsy South Africa enjoys a long association with Radio Nfm and

Brunhild and congratulates the station on being selected from more than 750 entries

INTERNATIONAL NEWS

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1319

New IBE Members

The IBE recently welcomed two new members

The new member associations are

The Association of Supporting Children with Special Needs (AOSCCS) in Moldova

attained full membership Visit the website wwwasccsmden

The Italian Federation Epilepsies attained associate membership Visit the website

wwwfiepilessieit

This brings the number of IBE Full Members to 98 and Associate Members to 37 IBE is

now represented in 100 countries worldwide

To view the details for each IBE member please choose from the following regions below

View contact details for members in the African region

View contact details for members in the Eastern Mediterranean region

View contact details for members in the European region

View contact details for members in the Latin American regions

View contact details for members in the North American region

View contact details for members in the South East Asian region

View contact details for members in the Western Pacific region

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1419

New York State Considering SUDEP Legislation

The New York legislature is considering legislation (SB 6232 and AB 8444) which would

require the medical certificate portion of a death certificate to include whether the

deceased suffered a sudden unexpected death in epilepsy (SUDEP) Illinois and New

Jersey already have passed similar SUDEP laws Collecting SUDEP data is critical to

improve our understanding of epilepsy related deaths and will allow us to discover risk

factors and ways to prevent it

Source Epilepsy Foundation newsletter 20 May 2014

FACTS CORNER

US Congress Urging HHS to Remove Barriers to Marijuana Research

Representatives Blumenauer Griffith Rohrabacher and Schakowsky are circulating a

letter with their Congressional colleagues urging the Secretary of the Department of

Health and Human Services (HHS) to remove barriers for medical marijuana research

Studies on marijuana must go through extensive review processes beyond what is

required for other Schedule I substances making it harder for research into the

connection between seizures and marijuana to take place

Source Epilepsy Foundation newsletter 20 May 2014

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1519

New Epilepsy Publication

Epilepsy has been found to affect at least 7 out of every 1000 individuals in rural South

Africa according to an Agincourt study published by Ryan Wagner and colleagues in

Epilepsy Research The research led by Professor Charles Newton of the Department

of Psychiatry Oxford University and funded by the Welcome Trust highlights the fact

that epilepsy one of the most common neurological disorders globally is less common in

rural South Africa than other parts of sub-Saharan Africa This research raises a

potential connection between epilepsy and snoring and provides evidence that improving

obstetric services could epilepsy in this context

The full article is available here

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1619

Source httpwwwagincourtcozaindexphp201403new-epilepsy-publication 24

May 2014

WHATS HAPPENING

National Epilepsy Week 2014

Celebrate National Epilepsy Week from 16 to 22 June 2014 with the theme ldquoWho has

epilepsyrdquo This broad theme points out that epilepsy is not physically discernable ndash

anyone can have it at any time Contact the nearest Branch to you by dialling 0860

EPILEPSY

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1719

31st International Epilepsy Congress

The 31st International Epilepsy Congress (IEC) will take place in Istanbul Turkey

between 6 and 10 September 2015

The congress is organised jointly by the International League Against Epilepsy (ILAE)

and the International Bureau for Epilepsy (IBE) The scientific programme of the 31st IEC

promises to be innovative and engaging with a wide range of main and parallel sessions

as well as teaching and video sessions

Research Survey

Do you have epilepsy Are you between the ages of 18-40

If you answered YES to both questions then you may be eligible to participate in a

research project

The purpose of this study is to evaluate the relationships between epilepsy

psychological development and health and epilepsy-related self-management The

survey will take approximately 20-25 minutes and must be completed online Although

you will receive no direct benefit your participation will help us learn more about people

who live with epilepsy which will potentially benefit care providers and people with

epilepsy Some participants may have a sense of satisfaction in knowing that they have

contributed to knowledge about young adults living with epilepsy

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1819

If you are interested in participating please visit the survey website

httpswwwsurveymonkeycoms8ZY9J5G

This study is being conducted as dissertation research by Channing Harris a doctoral

candidate in the School of Psychology at Fielding Graduate University 2020 De la Vina

Street Santa Barbara California 93105-3814 The study is under the supervision of

Joan Read PhD faculty member and Director of Practicum Training at Fielding

Graduate University

Closing date for participation 13 June 2014

If yoursquod like more information contact Channing at

Email gharrisemailfieldingedu

Phone 011-1-805-364-2861

CONTACT US

follow on Twitter | friend on Facebook | forward to a friend

Copyright copy 2014 Epilepsy South Africa All rights reserved

unsubscribe from this list | update subscription preferences

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1919

Page 11: Table of Contents - Epilepsy newsletter... · 077 4408 and E-mail: lduplessis@icasa.org.za SADPD Changes Its Name Mr Kudakwashe (AK) Dube, Chief Executive Officer of the Secretariat

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1119

Governmentrsquos Medium Term Strategic Framework 2014 ndash 2019 and to address the

shortcomings identified in the 2011 Draft Policy which did not fully make provision for its

integration into the government outcomes-based planning approach or the integration of

mainstreaming guidelines

ldquoDisabilityrdquo Ms Pretorius said ldquois not something a person has Disability is imposed by

society when a person with a long-term impairment is denied access to full participation

in all aspects of life and when society fails to uphold the rights and specific needs of

individuals with impairmentsrdquo

In terms of the new policy persons with disabilities will include all those who have long-

term physical psychosocial cognitive andor sensory impairments which in interaction

with various barriers may hinder their full and effective participation in society on an

equal basis with others SAE4D will be participating in consultations with the DWCPD

and monitoring the progress of the new Draft Policy and will keep members informed

about all new developments

Source South African Employers 4 Disability newsletter Issue 2 April 2014

South African NCD Strategic Plan 2013-2017

If you have not yet read the 4-year strategic plan for non-communicable diseases (NCD)

you can download it by clicking here

Source SA NCD AlliancePHANGO Newsletter Vol 1 (5)

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1219

Northern Cape Scoops Local Media Award

Radio Nfm in Namaqualand represented by guiding management member Brunhild

Strauss proudly walked away with top honours by being chosen as the Best Community

Radio Station in South Africa during the Local Media Awards in South Africa The

National Office of Epilepsy South Africa enjoys a long association with Radio Nfm and

Brunhild and congratulates the station on being selected from more than 750 entries

INTERNATIONAL NEWS

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1319

New IBE Members

The IBE recently welcomed two new members

The new member associations are

The Association of Supporting Children with Special Needs (AOSCCS) in Moldova

attained full membership Visit the website wwwasccsmden

The Italian Federation Epilepsies attained associate membership Visit the website

wwwfiepilessieit

This brings the number of IBE Full Members to 98 and Associate Members to 37 IBE is

now represented in 100 countries worldwide

To view the details for each IBE member please choose from the following regions below

View contact details for members in the African region

View contact details for members in the Eastern Mediterranean region

View contact details for members in the European region

View contact details for members in the Latin American regions

View contact details for members in the North American region

View contact details for members in the South East Asian region

View contact details for members in the Western Pacific region

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1419

New York State Considering SUDEP Legislation

The New York legislature is considering legislation (SB 6232 and AB 8444) which would

require the medical certificate portion of a death certificate to include whether the

deceased suffered a sudden unexpected death in epilepsy (SUDEP) Illinois and New

Jersey already have passed similar SUDEP laws Collecting SUDEP data is critical to

improve our understanding of epilepsy related deaths and will allow us to discover risk

factors and ways to prevent it

Source Epilepsy Foundation newsletter 20 May 2014

FACTS CORNER

US Congress Urging HHS to Remove Barriers to Marijuana Research

Representatives Blumenauer Griffith Rohrabacher and Schakowsky are circulating a

letter with their Congressional colleagues urging the Secretary of the Department of

Health and Human Services (HHS) to remove barriers for medical marijuana research

Studies on marijuana must go through extensive review processes beyond what is

required for other Schedule I substances making it harder for research into the

connection between seizures and marijuana to take place

Source Epilepsy Foundation newsletter 20 May 2014

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1519

New Epilepsy Publication

Epilepsy has been found to affect at least 7 out of every 1000 individuals in rural South

Africa according to an Agincourt study published by Ryan Wagner and colleagues in

Epilepsy Research The research led by Professor Charles Newton of the Department

of Psychiatry Oxford University and funded by the Welcome Trust highlights the fact

that epilepsy one of the most common neurological disorders globally is less common in

rural South Africa than other parts of sub-Saharan Africa This research raises a

potential connection between epilepsy and snoring and provides evidence that improving

obstetric services could epilepsy in this context

The full article is available here

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1619

Source httpwwwagincourtcozaindexphp201403new-epilepsy-publication 24

May 2014

WHATS HAPPENING

National Epilepsy Week 2014

Celebrate National Epilepsy Week from 16 to 22 June 2014 with the theme ldquoWho has

epilepsyrdquo This broad theme points out that epilepsy is not physically discernable ndash

anyone can have it at any time Contact the nearest Branch to you by dialling 0860

EPILEPSY

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1719

31st International Epilepsy Congress

The 31st International Epilepsy Congress (IEC) will take place in Istanbul Turkey

between 6 and 10 September 2015

The congress is organised jointly by the International League Against Epilepsy (ILAE)

and the International Bureau for Epilepsy (IBE) The scientific programme of the 31st IEC

promises to be innovative and engaging with a wide range of main and parallel sessions

as well as teaching and video sessions

Research Survey

Do you have epilepsy Are you between the ages of 18-40

If you answered YES to both questions then you may be eligible to participate in a

research project

The purpose of this study is to evaluate the relationships between epilepsy

psychological development and health and epilepsy-related self-management The

survey will take approximately 20-25 minutes and must be completed online Although

you will receive no direct benefit your participation will help us learn more about people

who live with epilepsy which will potentially benefit care providers and people with

epilepsy Some participants may have a sense of satisfaction in knowing that they have

contributed to knowledge about young adults living with epilepsy

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1819

If you are interested in participating please visit the survey website

httpswwwsurveymonkeycoms8ZY9J5G

This study is being conducted as dissertation research by Channing Harris a doctoral

candidate in the School of Psychology at Fielding Graduate University 2020 De la Vina

Street Santa Barbara California 93105-3814 The study is under the supervision of

Joan Read PhD faculty member and Director of Practicum Training at Fielding

Graduate University

Closing date for participation 13 June 2014

If yoursquod like more information contact Channing at

Email gharrisemailfieldingedu

Phone 011-1-805-364-2861

CONTACT US

follow on Twitter | friend on Facebook | forward to a friend

Copyright copy 2014 Epilepsy South Africa All rights reserved

unsubscribe from this list | update subscription preferences

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1919

Page 12: Table of Contents - Epilepsy newsletter... · 077 4408 and E-mail: lduplessis@icasa.org.za SADPD Changes Its Name Mr Kudakwashe (AK) Dube, Chief Executive Officer of the Secretariat

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1219

Northern Cape Scoops Local Media Award

Radio Nfm in Namaqualand represented by guiding management member Brunhild

Strauss proudly walked away with top honours by being chosen as the Best Community

Radio Station in South Africa during the Local Media Awards in South Africa The

National Office of Epilepsy South Africa enjoys a long association with Radio Nfm and

Brunhild and congratulates the station on being selected from more than 750 entries

INTERNATIONAL NEWS

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1319

New IBE Members

The IBE recently welcomed two new members

The new member associations are

The Association of Supporting Children with Special Needs (AOSCCS) in Moldova

attained full membership Visit the website wwwasccsmden

The Italian Federation Epilepsies attained associate membership Visit the website

wwwfiepilessieit

This brings the number of IBE Full Members to 98 and Associate Members to 37 IBE is

now represented in 100 countries worldwide

To view the details for each IBE member please choose from the following regions below

View contact details for members in the African region

View contact details for members in the Eastern Mediterranean region

View contact details for members in the European region

View contact details for members in the Latin American regions

View contact details for members in the North American region

View contact details for members in the South East Asian region

View contact details for members in the Western Pacific region

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1419

New York State Considering SUDEP Legislation

The New York legislature is considering legislation (SB 6232 and AB 8444) which would

require the medical certificate portion of a death certificate to include whether the

deceased suffered a sudden unexpected death in epilepsy (SUDEP) Illinois and New

Jersey already have passed similar SUDEP laws Collecting SUDEP data is critical to

improve our understanding of epilepsy related deaths and will allow us to discover risk

factors and ways to prevent it

Source Epilepsy Foundation newsletter 20 May 2014

FACTS CORNER

US Congress Urging HHS to Remove Barriers to Marijuana Research

Representatives Blumenauer Griffith Rohrabacher and Schakowsky are circulating a

letter with their Congressional colleagues urging the Secretary of the Department of

Health and Human Services (HHS) to remove barriers for medical marijuana research

Studies on marijuana must go through extensive review processes beyond what is

required for other Schedule I substances making it harder for research into the

connection between seizures and marijuana to take place

Source Epilepsy Foundation newsletter 20 May 2014

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1519

New Epilepsy Publication

Epilepsy has been found to affect at least 7 out of every 1000 individuals in rural South

Africa according to an Agincourt study published by Ryan Wagner and colleagues in

Epilepsy Research The research led by Professor Charles Newton of the Department

of Psychiatry Oxford University and funded by the Welcome Trust highlights the fact

that epilepsy one of the most common neurological disorders globally is less common in

rural South Africa than other parts of sub-Saharan Africa This research raises a

potential connection between epilepsy and snoring and provides evidence that improving

obstetric services could epilepsy in this context

The full article is available here

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1619

Source httpwwwagincourtcozaindexphp201403new-epilepsy-publication 24

May 2014

WHATS HAPPENING

National Epilepsy Week 2014

Celebrate National Epilepsy Week from 16 to 22 June 2014 with the theme ldquoWho has

epilepsyrdquo This broad theme points out that epilepsy is not physically discernable ndash

anyone can have it at any time Contact the nearest Branch to you by dialling 0860

EPILEPSY

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1719

31st International Epilepsy Congress

The 31st International Epilepsy Congress (IEC) will take place in Istanbul Turkey

between 6 and 10 September 2015

The congress is organised jointly by the International League Against Epilepsy (ILAE)

and the International Bureau for Epilepsy (IBE) The scientific programme of the 31st IEC

promises to be innovative and engaging with a wide range of main and parallel sessions

as well as teaching and video sessions

Research Survey

Do you have epilepsy Are you between the ages of 18-40

If you answered YES to both questions then you may be eligible to participate in a

research project

The purpose of this study is to evaluate the relationships between epilepsy

psychological development and health and epilepsy-related self-management The

survey will take approximately 20-25 minutes and must be completed online Although

you will receive no direct benefit your participation will help us learn more about people

who live with epilepsy which will potentially benefit care providers and people with

epilepsy Some participants may have a sense of satisfaction in knowing that they have

contributed to knowledge about young adults living with epilepsy

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1819

If you are interested in participating please visit the survey website

httpswwwsurveymonkeycoms8ZY9J5G

This study is being conducted as dissertation research by Channing Harris a doctoral

candidate in the School of Psychology at Fielding Graduate University 2020 De la Vina

Street Santa Barbara California 93105-3814 The study is under the supervision of

Joan Read PhD faculty member and Director of Practicum Training at Fielding

Graduate University

Closing date for participation 13 June 2014

If yoursquod like more information contact Channing at

Email gharrisemailfieldingedu

Phone 011-1-805-364-2861

CONTACT US

follow on Twitter | friend on Facebook | forward to a friend

Copyright copy 2014 Epilepsy South Africa All rights reserved

unsubscribe from this list | update subscription preferences

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1919

Page 13: Table of Contents - Epilepsy newsletter... · 077 4408 and E-mail: lduplessis@icasa.org.za SADPD Changes Its Name Mr Kudakwashe (AK) Dube, Chief Executive Officer of the Secretariat

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1319

New IBE Members

The IBE recently welcomed two new members

The new member associations are

The Association of Supporting Children with Special Needs (AOSCCS) in Moldova

attained full membership Visit the website wwwasccsmden

The Italian Federation Epilepsies attained associate membership Visit the website

wwwfiepilessieit

This brings the number of IBE Full Members to 98 and Associate Members to 37 IBE is

now represented in 100 countries worldwide

To view the details for each IBE member please choose from the following regions below

View contact details for members in the African region

View contact details for members in the Eastern Mediterranean region

View contact details for members in the European region

View contact details for members in the Latin American regions

View contact details for members in the North American region

View contact details for members in the South East Asian region

View contact details for members in the Western Pacific region

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1419

New York State Considering SUDEP Legislation

The New York legislature is considering legislation (SB 6232 and AB 8444) which would

require the medical certificate portion of a death certificate to include whether the

deceased suffered a sudden unexpected death in epilepsy (SUDEP) Illinois and New

Jersey already have passed similar SUDEP laws Collecting SUDEP data is critical to

improve our understanding of epilepsy related deaths and will allow us to discover risk

factors and ways to prevent it

Source Epilepsy Foundation newsletter 20 May 2014

FACTS CORNER

US Congress Urging HHS to Remove Barriers to Marijuana Research

Representatives Blumenauer Griffith Rohrabacher and Schakowsky are circulating a

letter with their Congressional colleagues urging the Secretary of the Department of

Health and Human Services (HHS) to remove barriers for medical marijuana research

Studies on marijuana must go through extensive review processes beyond what is

required for other Schedule I substances making it harder for research into the

connection between seizures and marijuana to take place

Source Epilepsy Foundation newsletter 20 May 2014

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1519

New Epilepsy Publication

Epilepsy has been found to affect at least 7 out of every 1000 individuals in rural South

Africa according to an Agincourt study published by Ryan Wagner and colleagues in

Epilepsy Research The research led by Professor Charles Newton of the Department

of Psychiatry Oxford University and funded by the Welcome Trust highlights the fact

that epilepsy one of the most common neurological disorders globally is less common in

rural South Africa than other parts of sub-Saharan Africa This research raises a

potential connection between epilepsy and snoring and provides evidence that improving

obstetric services could epilepsy in this context

The full article is available here

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1619

Source httpwwwagincourtcozaindexphp201403new-epilepsy-publication 24

May 2014

WHATS HAPPENING

National Epilepsy Week 2014

Celebrate National Epilepsy Week from 16 to 22 June 2014 with the theme ldquoWho has

epilepsyrdquo This broad theme points out that epilepsy is not physically discernable ndash

anyone can have it at any time Contact the nearest Branch to you by dialling 0860

EPILEPSY

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1719

31st International Epilepsy Congress

The 31st International Epilepsy Congress (IEC) will take place in Istanbul Turkey

between 6 and 10 September 2015

The congress is organised jointly by the International League Against Epilepsy (ILAE)

and the International Bureau for Epilepsy (IBE) The scientific programme of the 31st IEC

promises to be innovative and engaging with a wide range of main and parallel sessions

as well as teaching and video sessions

Research Survey

Do you have epilepsy Are you between the ages of 18-40

If you answered YES to both questions then you may be eligible to participate in a

research project

The purpose of this study is to evaluate the relationships between epilepsy

psychological development and health and epilepsy-related self-management The

survey will take approximately 20-25 minutes and must be completed online Although

you will receive no direct benefit your participation will help us learn more about people

who live with epilepsy which will potentially benefit care providers and people with

epilepsy Some participants may have a sense of satisfaction in knowing that they have

contributed to knowledge about young adults living with epilepsy

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1819

If you are interested in participating please visit the survey website

httpswwwsurveymonkeycoms8ZY9J5G

This study is being conducted as dissertation research by Channing Harris a doctoral

candidate in the School of Psychology at Fielding Graduate University 2020 De la Vina

Street Santa Barbara California 93105-3814 The study is under the supervision of

Joan Read PhD faculty member and Director of Practicum Training at Fielding

Graduate University

Closing date for participation 13 June 2014

If yoursquod like more information contact Channing at

Email gharrisemailfieldingedu

Phone 011-1-805-364-2861

CONTACT US

follow on Twitter | friend on Facebook | forward to a friend

Copyright copy 2014 Epilepsy South Africa All rights reserved

unsubscribe from this list | update subscription preferences

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1919

Page 14: Table of Contents - Epilepsy newsletter... · 077 4408 and E-mail: lduplessis@icasa.org.za SADPD Changes Its Name Mr Kudakwashe (AK) Dube, Chief Executive Officer of the Secretariat

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1419

New York State Considering SUDEP Legislation

The New York legislature is considering legislation (SB 6232 and AB 8444) which would

require the medical certificate portion of a death certificate to include whether the

deceased suffered a sudden unexpected death in epilepsy (SUDEP) Illinois and New

Jersey already have passed similar SUDEP laws Collecting SUDEP data is critical to

improve our understanding of epilepsy related deaths and will allow us to discover risk

factors and ways to prevent it

Source Epilepsy Foundation newsletter 20 May 2014

FACTS CORNER

US Congress Urging HHS to Remove Barriers to Marijuana Research

Representatives Blumenauer Griffith Rohrabacher and Schakowsky are circulating a

letter with their Congressional colleagues urging the Secretary of the Department of

Health and Human Services (HHS) to remove barriers for medical marijuana research

Studies on marijuana must go through extensive review processes beyond what is

required for other Schedule I substances making it harder for research into the

connection between seizures and marijuana to take place

Source Epilepsy Foundation newsletter 20 May 2014

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1519

New Epilepsy Publication

Epilepsy has been found to affect at least 7 out of every 1000 individuals in rural South

Africa according to an Agincourt study published by Ryan Wagner and colleagues in

Epilepsy Research The research led by Professor Charles Newton of the Department

of Psychiatry Oxford University and funded by the Welcome Trust highlights the fact

that epilepsy one of the most common neurological disorders globally is less common in

rural South Africa than other parts of sub-Saharan Africa This research raises a

potential connection between epilepsy and snoring and provides evidence that improving

obstetric services could epilepsy in this context

The full article is available here

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1619

Source httpwwwagincourtcozaindexphp201403new-epilepsy-publication 24

May 2014

WHATS HAPPENING

National Epilepsy Week 2014

Celebrate National Epilepsy Week from 16 to 22 June 2014 with the theme ldquoWho has

epilepsyrdquo This broad theme points out that epilepsy is not physically discernable ndash

anyone can have it at any time Contact the nearest Branch to you by dialling 0860

EPILEPSY

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1719

31st International Epilepsy Congress

The 31st International Epilepsy Congress (IEC) will take place in Istanbul Turkey

between 6 and 10 September 2015

The congress is organised jointly by the International League Against Epilepsy (ILAE)

and the International Bureau for Epilepsy (IBE) The scientific programme of the 31st IEC

promises to be innovative and engaging with a wide range of main and parallel sessions

as well as teaching and video sessions

Research Survey

Do you have epilepsy Are you between the ages of 18-40

If you answered YES to both questions then you may be eligible to participate in a

research project

The purpose of this study is to evaluate the relationships between epilepsy

psychological development and health and epilepsy-related self-management The

survey will take approximately 20-25 minutes and must be completed online Although

you will receive no direct benefit your participation will help us learn more about people

who live with epilepsy which will potentially benefit care providers and people with

epilepsy Some participants may have a sense of satisfaction in knowing that they have

contributed to knowledge about young adults living with epilepsy

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1819

If you are interested in participating please visit the survey website

httpswwwsurveymonkeycoms8ZY9J5G

This study is being conducted as dissertation research by Channing Harris a doctoral

candidate in the School of Psychology at Fielding Graduate University 2020 De la Vina

Street Santa Barbara California 93105-3814 The study is under the supervision of

Joan Read PhD faculty member and Director of Practicum Training at Fielding

Graduate University

Closing date for participation 13 June 2014

If yoursquod like more information contact Channing at

Email gharrisemailfieldingedu

Phone 011-1-805-364-2861

CONTACT US

follow on Twitter | friend on Facebook | forward to a friend

Copyright copy 2014 Epilepsy South Africa All rights reserved

unsubscribe from this list | update subscription preferences

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1919

Page 15: Table of Contents - Epilepsy newsletter... · 077 4408 and E-mail: lduplessis@icasa.org.za SADPD Changes Its Name Mr Kudakwashe (AK) Dube, Chief Executive Officer of the Secretariat

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1519

New Epilepsy Publication

Epilepsy has been found to affect at least 7 out of every 1000 individuals in rural South

Africa according to an Agincourt study published by Ryan Wagner and colleagues in

Epilepsy Research The research led by Professor Charles Newton of the Department

of Psychiatry Oxford University and funded by the Welcome Trust highlights the fact

that epilepsy one of the most common neurological disorders globally is less common in

rural South Africa than other parts of sub-Saharan Africa This research raises a

potential connection between epilepsy and snoring and provides evidence that improving

obstetric services could epilepsy in this context

The full article is available here

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1619

Source httpwwwagincourtcozaindexphp201403new-epilepsy-publication 24

May 2014

WHATS HAPPENING

National Epilepsy Week 2014

Celebrate National Epilepsy Week from 16 to 22 June 2014 with the theme ldquoWho has

epilepsyrdquo This broad theme points out that epilepsy is not physically discernable ndash

anyone can have it at any time Contact the nearest Branch to you by dialling 0860

EPILEPSY

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1719

31st International Epilepsy Congress

The 31st International Epilepsy Congress (IEC) will take place in Istanbul Turkey

between 6 and 10 September 2015

The congress is organised jointly by the International League Against Epilepsy (ILAE)

and the International Bureau for Epilepsy (IBE) The scientific programme of the 31st IEC

promises to be innovative and engaging with a wide range of main and parallel sessions

as well as teaching and video sessions

Research Survey

Do you have epilepsy Are you between the ages of 18-40

If you answered YES to both questions then you may be eligible to participate in a

research project

The purpose of this study is to evaluate the relationships between epilepsy

psychological development and health and epilepsy-related self-management The

survey will take approximately 20-25 minutes and must be completed online Although

you will receive no direct benefit your participation will help us learn more about people

who live with epilepsy which will potentially benefit care providers and people with

epilepsy Some participants may have a sense of satisfaction in knowing that they have

contributed to knowledge about young adults living with epilepsy

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1819

If you are interested in participating please visit the survey website

httpswwwsurveymonkeycoms8ZY9J5G

This study is being conducted as dissertation research by Channing Harris a doctoral

candidate in the School of Psychology at Fielding Graduate University 2020 De la Vina

Street Santa Barbara California 93105-3814 The study is under the supervision of

Joan Read PhD faculty member and Director of Practicum Training at Fielding

Graduate University

Closing date for participation 13 June 2014

If yoursquod like more information contact Channing at

Email gharrisemailfieldingedu

Phone 011-1-805-364-2861

CONTACT US

follow on Twitter | friend on Facebook | forward to a friend

Copyright copy 2014 Epilepsy South Africa All rights reserved

unsubscribe from this list | update subscription preferences

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1919

Page 16: Table of Contents - Epilepsy newsletter... · 077 4408 and E-mail: lduplessis@icasa.org.za SADPD Changes Its Name Mr Kudakwashe (AK) Dube, Chief Executive Officer of the Secretariat

662014 Epilepsy South Africa Newsletter June 2014

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Source httpwwwagincourtcozaindexphp201403new-epilepsy-publication 24

May 2014

WHATS HAPPENING

National Epilepsy Week 2014

Celebrate National Epilepsy Week from 16 to 22 June 2014 with the theme ldquoWho has

epilepsyrdquo This broad theme points out that epilepsy is not physically discernable ndash

anyone can have it at any time Contact the nearest Branch to you by dialling 0860

EPILEPSY

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1719

31st International Epilepsy Congress

The 31st International Epilepsy Congress (IEC) will take place in Istanbul Turkey

between 6 and 10 September 2015

The congress is organised jointly by the International League Against Epilepsy (ILAE)

and the International Bureau for Epilepsy (IBE) The scientific programme of the 31st IEC

promises to be innovative and engaging with a wide range of main and parallel sessions

as well as teaching and video sessions

Research Survey

Do you have epilepsy Are you between the ages of 18-40

If you answered YES to both questions then you may be eligible to participate in a

research project

The purpose of this study is to evaluate the relationships between epilepsy

psychological development and health and epilepsy-related self-management The

survey will take approximately 20-25 minutes and must be completed online Although

you will receive no direct benefit your participation will help us learn more about people

who live with epilepsy which will potentially benefit care providers and people with

epilepsy Some participants may have a sense of satisfaction in knowing that they have

contributed to knowledge about young adults living with epilepsy

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1819

If you are interested in participating please visit the survey website

httpswwwsurveymonkeycoms8ZY9J5G

This study is being conducted as dissertation research by Channing Harris a doctoral

candidate in the School of Psychology at Fielding Graduate University 2020 De la Vina

Street Santa Barbara California 93105-3814 The study is under the supervision of

Joan Read PhD faculty member and Director of Practicum Training at Fielding

Graduate University

Closing date for participation 13 June 2014

If yoursquod like more information contact Channing at

Email gharrisemailfieldingedu

Phone 011-1-805-364-2861

CONTACT US

follow on Twitter | friend on Facebook | forward to a friend

Copyright copy 2014 Epilepsy South Africa All rights reserved

unsubscribe from this list | update subscription preferences

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1919

Page 17: Table of Contents - Epilepsy newsletter... · 077 4408 and E-mail: lduplessis@icasa.org.za SADPD Changes Its Name Mr Kudakwashe (AK) Dube, Chief Executive Officer of the Secretariat

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1719

31st International Epilepsy Congress

The 31st International Epilepsy Congress (IEC) will take place in Istanbul Turkey

between 6 and 10 September 2015

The congress is organised jointly by the International League Against Epilepsy (ILAE)

and the International Bureau for Epilepsy (IBE) The scientific programme of the 31st IEC

promises to be innovative and engaging with a wide range of main and parallel sessions

as well as teaching and video sessions

Research Survey

Do you have epilepsy Are you between the ages of 18-40

If you answered YES to both questions then you may be eligible to participate in a

research project

The purpose of this study is to evaluate the relationships between epilepsy

psychological development and health and epilepsy-related self-management The

survey will take approximately 20-25 minutes and must be completed online Although

you will receive no direct benefit your participation will help us learn more about people

who live with epilepsy which will potentially benefit care providers and people with

epilepsy Some participants may have a sense of satisfaction in knowing that they have

contributed to knowledge about young adults living with epilepsy

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1819

If you are interested in participating please visit the survey website

httpswwwsurveymonkeycoms8ZY9J5G

This study is being conducted as dissertation research by Channing Harris a doctoral

candidate in the School of Psychology at Fielding Graduate University 2020 De la Vina

Street Santa Barbara California 93105-3814 The study is under the supervision of

Joan Read PhD faculty member and Director of Practicum Training at Fielding

Graduate University

Closing date for participation 13 June 2014

If yoursquod like more information contact Channing at

Email gharrisemailfieldingedu

Phone 011-1-805-364-2861

CONTACT US

follow on Twitter | friend on Facebook | forward to a friend

Copyright copy 2014 Epilepsy South Africa All rights reserved

unsubscribe from this list | update subscription preferences

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1919

Page 18: Table of Contents - Epilepsy newsletter... · 077 4408 and E-mail: lduplessis@icasa.org.za SADPD Changes Its Name Mr Kudakwashe (AK) Dube, Chief Executive Officer of the Secretariat

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1819

If you are interested in participating please visit the survey website

httpswwwsurveymonkeycoms8ZY9J5G

This study is being conducted as dissertation research by Channing Harris a doctoral

candidate in the School of Psychology at Fielding Graduate University 2020 De la Vina

Street Santa Barbara California 93105-3814 The study is under the supervision of

Joan Read PhD faculty member and Director of Practicum Training at Fielding

Graduate University

Closing date for participation 13 June 2014

If yoursquod like more information contact Channing at

Email gharrisemailfieldingedu

Phone 011-1-805-364-2861

CONTACT US

follow on Twitter | friend on Facebook | forward to a friend

Copyright copy 2014 Epilepsy South Africa All rights reserved

unsubscribe from this list | update subscription preferences

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1919

Page 19: Table of Contents - Epilepsy newsletter... · 077 4408 and E-mail: lduplessis@icasa.org.za SADPD Changes Its Name Mr Kudakwashe (AK) Dube, Chief Executive Officer of the Secretariat

662014 Epilepsy South Africa Newsletter June 2014

httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1919