Annual Report 2013-14

AustraliaTuberous Sclerosis

is that TSC families are empowered, through access to information and

support.

Our Vision

aff ects more than 2000 individuals in Australia and thousands more carers, families and

friends who live with the impact of the disease.

TSC tumours can grow in any organ of the body, commonly aff ecting the brain, skin, heart,

lungs and kidneys. TSC can cause epilepsy, developmental delay and autism. There is no

known cure for TSC.

Tuberous Sclerosis Complex (TSC)

Our Team in 2014Debbie Crosby, President

Kate Norris, Vice President

Hayley Hill, Treasurer and Membership Secretary

David Matheson, Minutes Secretary and Editor of Reach Out

Kate Green, Committee Member

Jannifer Reynolds, Committee Member

Sally Nicholson, Family Support Volunteer

Clare Stuart, Project Manager

Regional Contacts

A vital part of our volunteer team, the regional contacts

live throughout Australia and New Zealand and work

with local families to share information and experiences.

NSW: Janiff er Reynolds

WA: Nicole Stone & Sue Williamson

QLD: Fiona Hiatt

VIC: Narelle Kerr

TAS: Georgina Schilg

Medical Advisors

Dr Sean Kennedy, Nephrologist

Dr John Lawson, Paediatric Neurologist

Dr David Mowat, Clinical Geneticist

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information and to also

meet each other and share

their stories and knowledge of local services. Our work

supporting individuals and families is made possible

by the dedication, commitment and hard work of our

volunteers. I would like to thank all of the team who

donate their precious time and do an outstanding job. I

would particularly like to thank Jannifer Reynolds who

is stepping down from her role as a committee member.

Jannifer has made a signfi ciant contribution during her

many years in this volunteer role and we are pleased she

is staying on as a regional contact for the NSW Hunter

region. I would also like to thank Hayley Hill who is

stepping down from the Treasurerís role. Hayley has done

an amazing job managing the fi nances of our organisation

and the old saying of ëif you want something done, ask

a busy personí rings true for Hayley. I would also like to

acknowledge the wonderful work of our regional contacts

the very important work they do in keeping people

connected all around Australia and all of the volunteers

that support our organisation.

Few of the achievements of this year would have

happened without the great work of our Project Manager

Clare Stuart. Clare returned from maternity leave late last

year and her dedication and experience is invaluable. She

has been the driving force in improving what we do and

growing to support the diverse needs of our members.

Most importantly thank you to all the donors, fundraisers

and business supporters who contributed during this year.

Without your generous donations we would not be able

to do the work we do.

I look forward to an exciting future for Tuberous Sclerosis

Australia.

- Debbie Crosby, President

There have been many achievements and highlights

which have supported our vision that TSC families

are empowered, through access to information and

support. With your help we will continue our work in

2014-2015 under the new name Tuberous Sclerosis

Australia and work closely with the newly established

Tuberous Sclerosis Complex New Zealand.

Online communication has allowed us to reach many

people through our website, Facebook page and our

email newsletter. Instant connection with our members

allows us to raise awareness, publish up to date

information and helps to connect people who can share

their experiences. Information and support are our main

goals and seeing the numbers of individuals we support

growing each year is very rewarding.

One of our projects this year was to focus on fundraising.

As we are a small organisation that does not receive

government funding, it is really important to plan ahead

on how we are going to attract more donations so we

cannot only sustain our organisation but to grow and fi nd

new ways to support our members. After developing our

fi rst fundraising plan we are now implementing the plan

and we have already seen growth in donations.

Another major achievement in the past year was

the subsidy of the medicine Everolimus through the

pharmaceutical benefi ts scheme (PBS). Everolimus is now

approved in Australia for the treatment of SEGAs and

kidney angiomyolipomas and its inclusion on the PBS will

improve access to this medication and support clinicians

in providing the best care to their patients. I would like

to thank the families who made personal submissions to

the PBAC. We were informed your submissions along with

ours had a big impact on the PBAC who are responsible

for the approval. It is very rewarding to see our advocacy

making a diff erence for people living with TSC.

Educational events are an important part of what we

do and our goal of hosting events around the country

has been very successful. After a successful conference

in Perth in early 2013 we hosted an information day in

Melbourne. Dr Chris Kingswood, a very experienced

nephrologist from the UK who specialises in TSC,

presented along with Dr Simon Harvey from the

Royal Childrenís Hospital. These events provide

opportunities for families to get the most up to date

President’s Message

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6

With your help we...

Supported a new treatment for

facial angiofi bromas by funding

the extension phase to the

international clinical trial into the

use of topical rapamycin. Facial

angiofobromas are a disfi guring

skin condition experienced by up

to 90% of people with TSC and

this new medicine is shrinking

these skin tumours and providing

an alternative to painful and

expensive laser surgery.

Advocated for the availability

of pre-implantation genetic

diagnosis (PGD) for Tuberous

Sclerosis and other genetic

diseases to the Medicare Services

Advisory Committee (MSAC)

Celebrated the listing

of Everolimus on the

Pharmaceuitcal Benefi ts Scheme,

the fi rst treatment specifi c to

Tuberous Sclerosis.

Strengthened our relationships

with peak organisations to

increase their understanding of

the complex care needs of people

with Tuberous Sclerosis.

Info

Infofofo

Inffo

nfo

rfo

rmmatt

iotion

Improved the TSC knowledge

of current and future health

professionals by presenting

lectures for Epilepsy Action, Sydney

University Genetic Counselling

Students and the Queensland Centre

for Intellectual Disability.

Encouraged GPs to update their

TSC knowledge by completing the

new BMJ elearning module. Our fl yer

was distributed to families to give

to their primary care doctors and

nurses.

Hosted information events in

Sydney, Melbourne and Perth,

attended by more than 50 people.

Published two issues of Reach

Out, full of valuable information and

stories from people aff ected by TSC

that ease feelings of isolation.

Authored two new information

pages: mTOR inhibitor medicines

and genetic testing. This brings our

total collection to 12 pages of high

quality information fully reviewed by

health professionals.

Sent nine email newsletters

to more than 250 subscribers,

providing families and interested

health professionals with accurate

and up to date TSC information.

Rese

arch

& A

dvoc

acy

TSA works closely with

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Supported more than 100 families

throughout Australia and New Zealand

via our phone, email and direct facebook

contact services.

Hosted six family picnics around

Australia in May, plus families connected at

educational events during the year.

Facilitated peer support through our

active facebook discussion group. With

more than 275 members and more than

280 topics throughout the year.

Supp

ort

Raised awareness of Tuberous Sclerosis on facebook to our

375 followers and up to 4000 others each post through shares

and likes of our 143 posts.

Promoted balanced and accurate understanding of TSC

through our website which is visited by 50 people each day.

Expanded our reach through local newspaper coverage in

Sydney’s Inner West Courier.

Aw

aren

ess

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Our survey of families living with Tuberous Sclerosis reveals areas of greatest need

During 2014 we conducted a survey that aimed to:

improve our understanding of people living with TSC in

Australia;

gather feedback on our activities and services;

understand areas of need that we can address;

provide a way for people living with TSC to engage with us;

identify individuals who are willing to contribute through

volunteering, sharing their story, or fundraising.

The 88 responses from around Australia reinforced the need for

improved information, support and health services for individuals

living with TSC, their parents, families and community. These

results will inform the future plans of Tuberous Sclerosis Australia

and with your help we can continue improving the lives of families

living with this disease and those that are yet to be given this

devastating diagnosis.

The families who responded told us that:

Epilepsy, learning diffi culties, autism, intellectual disability, and

challenging behaviours had the largest impact on their lives;

Worry about the future and barriers to full participation in

society are a major concern, particularly for aging parents of

dependent adults with TSC;

Our current services, such as our website, magazine and phone

support are highly valued, with the majority rating these as

excellent or very good;

They want us to continue our work providing accurate and

balanced information about TSC;

They want us to expand our work with health professionals and

in supporting TSC research.

Thank you to the families that took the time to respond to the

survey. The full results of the survey will be published in a report

on our website.

My biggest concern is his social interactions, in the home, at work and with minimal friends. I worry about what the future holds and whether he will be ever able to independent. I worry that he will be lonely.

There was limited support when I had my son 16 years ago. I felt isolated and overwhelmed… I went through his fi rst 5 years living in fear of what the future held. I had limited exposure to other people going through the same journey and my feelings of isolation compounded the grief I felt. The Facebook group has been a godsend in allowing me to get support in a community of people that truly identify with our situation. I also feel that I can contribute to others in the group which gives me a sense of empowerment

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Financial OverviewTuberous Sclerosis Australia recorded an overall surplus of $13,879.95 in 2013/14, infl uenced by:

33,908.65 funding provided to the clinical trial of topical rapamycin for facial angiofi bromas.

$45,000 grants received from Novartis, of which $20,000 is yet to be spent for the 2014 Family Conference in

Auckland, New Zealand.

Income and Expenditure

Where the money comes from Where the money goes to

We have approximately $206,000 as true

reserves.

In addition we hold:

$5,000 set aside to fund the perpetual

Elizabeth Pinkerton memorial award

$20,000 set aside to fund the 2014

Family Conference in New Zealand

Approximately $25,000 reserved for

remaining topical rapamycin research

and advocacy work

Our position

Generaldonations and

membership fees28%

Grants40%

Investmentand other

income17%

Fundraisingevents15%

Administration23%

Research38%

FundraisingCosts22%

Educationand

support17%

$10,000

2011/12

2012/13

2013/14

$20,000 $30,000 $40,000 $50,000

Fundraising Growth

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Our work with pharmaceutical companies

Our work is made possible by the support of our donors

and fundraisers. Major fundraising eff orts during this year

included:

City2Surf runners raised over $5,000 in August 2013

The Place Family TSC Heroes triathlon team raised

over $5,000 with more to come in 2014/15

The innaugural Lizzie’s Lunch raised over $5,000

after costs

During this year, we have collaborated with Novartis Pharmaceuticals in a number of ways:

A total of $45,000 received in grants towards imrpovements in our fundraising capabilities

and for the Auckland family conference being held in November 2014

Clare Stuart’s travel to the world TSC conferences in Washington, DC, USA was sponsored by TSC

International from a grant from Novartis

TSA provided a patient and family perspective at the Novartis TSC Renal Advisory Board meeting on 21st

February 2014

TSA is a member of the steering committee for the review of the Working Together Guide for patient

organisations and pharmaceutical companies. This guide is a joint project of Consumers’ Health Forum

and Medicines Australia (a pharmaceutical industry group) and TSA receives a modest sitting fee

for this work

Clare Stuart volunteered her time as a member of the steering committee for the Health Consumer Advocacy

group. Events held by this group are fi nancially supported by a group of six pharmaceuitcal companies.

Our team met with Novartis several times to keep up to date on their work with new medicines for TSC.

Our Policy on Working with Pharmaceutical Companies describes how we maintains our independence and

integrity. This policy can be viewed on our website or provided on request.

Thank you

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Profi t and Loss: Year ended June 2014June 2014 June 2013

Income

Donations $43,909.45 $32,590.76

Donation - Rapamycin $0.00 $435.00

Gold Supporter $250.00 $100.00

Silver Supporter $115.00 $45.00

Bronze Supporter $240.00 $130.00

Lizzie’s Lunch Event $4,510.00 $0.00

Committee Sitting Fees $659.00 $345.00

Interest Income $6,648.66 $10,706.90

Grants Received $45,000.00 $44,584.00

2013 Melbourne Conference Registration $380.00 $0.00

Promotional Products $0.00 $150.00

2011 Family Conference Book & DVD $0.00 $20.00

2012 Brisbane Seminar $0.00 $161.00

2013 WA Conference Registration $0.00 $2,715.00

2013 WA Conference Dinner $0.00 $1,980.00

Seminar Day Registration $510.00 $420.00

Australian Government Paid Parental Leave $11,197.80 $0.00

Total Income $113,419.91 $94,382.66

Expenses

NSW Fair Trading Fees $52.00 $51.00

QLD ACNCS Fee $0.00 $500.00

Fees to other Membership Comp $170.00 $50.00

Everyday Hero Fee $855.38 $411.84

Conference Registrations $924.08 $0.00

2013 WA Conference Expenses $570.00 $9,183.11

2103 Conference Travel/Accommodation Reimbursement $420.00 $7,870.81

2013 WA Conference Catering Expense $0.00 $2,486.50

Seminar Day Expenses $128.99 $323.15

Melbourne 2013 Conference $755.00 $0.00

Lizzie’s Lunch Catering $2,690.00 $0.00

Rapamycin Trial Costs $33,838.90 $65,913.20

Bank Charges $650.49 $989.92

Eway Web Active Fees $554.45 $40.20

Insurances $2,063.93 $2,030.93

PayPal Charges $0.00 $2.74

Postage $540.19 $414.75

Printing $88.76 $663.58

Offi ce Supplies $862.67 $484.30

Financial StatementsThe accounts for 2013-2014 were reviewed by Rachel Goddard (ACA). A copy of her audit opinion is available on request.

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Profi t and Loss: Year ended June 2014 cont.

Expenses cont. June 2014 June 2013

Computer Programs $105.60 $40.70

IT System Maintenance $3,150.00 $11,297.25

Telephone $838.98 $815.39

Other Expenses $50.50 $160.00

Travel & Accommodation $1,019.69 $8,732.54

Gifts & Awards $303.80 $709.45

Educational Products $924.55 $0.00

Fundraising Growth $9,937.09 $0.00

Wages & Salaries $17,490.48 $15,252.64

Australian Government Paid Parental Leave $11,197.80 $0.00

Police Checks for Committee $67.90 $0.00

Superannuation $1,452.16 $1,581.42

Workers Compensation $175.00 $175.00

Publishing & Printing ReachOut $5,061.43 $5,176.38

Postage for ReachOut $713.73 $705.80

Publishing and Printing Annual Report $1,886.41 $0.00

Total Expenses $99,539.96 $136,062.60

Operating Profi t/(Loss) $13,879.95 ($41,679.94)

Other Income $0.00 $0.00

Net Profi t/(Loss) $13,879.95 ($41,679.94)

Assets

General Cheque Account $72,483.35

PayPal Account ($19.48)

Investments

Macquarie Cash Management Account $8,084.05

Macquarie Term Deposit - Matures 7/4/2015 $33,646.81

CBA Cash Investment Account $19,381.95

Term Deposit - E Pinkerton Matures 19/5 $5,000.00

CBA Term Deposit Matures 19/10/14 $118,571.80

Total Assets $257,148.48

Balance Sheet as at 30 June 2014

Liabilities

Current Liabilites

Gold Supporters in Advance $200.00

Silver Supporter in Advance $75.00

Bronze Supporter in Advance $130.00

Total Liabilities $2405.00

Net Assets $256,743.48

Equity

Retained Earnings $242,863.53

Current Earnings $13,879.95

Total Equity $256,743.48

Phone 1300 733 435 (within Australia)

Email info@tsa.org.au

Website www.tsa.org.au

Facebook www.facebook.com/AuTSC

Mail Tuberous Sclerosis Australia

17 Linksview Rd, Springwood

NSW 2777 Australia

ABN 20 681 174 734 Incorporation no. Y 07116-42 Registered Charity CC25313

CFN 13968

Donations of $2and over aretax deductible

We think all families with TSC should have someone to turn to. Help us make this a reality.

AustraliaTuberous Sclerosis