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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
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
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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
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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
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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
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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
662014 Epilepsy South Africa Newsletter June 2014
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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
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
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
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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
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
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
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
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
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
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
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
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
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
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
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
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
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662014 Epilepsy South Africa Newsletter June 2014
httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1919
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
662014 Epilepsy South Africa Newsletter June 2014
httpus7campaign-archive2comu=c0810bc6019da7e92ccfeea3aampid=7019973d8eampe=[UNIQID] 1919