Tuberous Sclerosis Australia Annual report 2014

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Annual Report 2013-14

Tuberous Sclerosis Australia

Tuberous Sclerosis Complex (TSC) affects 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 affecting the brain, skin, heart, lungs and kidneys. TSC can cause epilepsy, developmental delay and autism. There is no known cure for TSC.

Our Vision is that TSC families are empowered, through access to information and support.

Our Team in 2014 Debbie 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:

Janiffer Reynolds


Nicole Stone & Sue Williamson


Fiona Hiatt


Narelle Kerr


Georgina Schilg

Medical Advisors Dr Sean Kennedy, Nephrologist Dr John Lawson, Paediatric Neurologist Dr David Mowat, Clinical Geneticist


President’s Message 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

information and to also

people through our website, Facebook page and our

meet each other and share

email newsletter. Instant connection with our members

their stories and knowledge of local services. Our work

allows us to raise awareness, publish up to date

supporting individuals and families is made possible

information and helps to connect people who can share

by the dedication, commitment and hard work of our

their experiences. Information and support are our main

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

goals and seeing the numbers of individuals we support

donate their precious time and do an outstanding job. I

growing each year is very rewarding.

would particularly like to thank Jannifer Reynolds who

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

is stepping down from her role as a committee member.

As we are a small organisation that does not receive

Jannifer has made a signficiant contribution during her

government funding, it is really important to plan ahead

many years in this volunteer role and we are pleased she

on how we are going to attract more donations so we

is staying on as a regional contact for the NSW Hunter

cannot only sustain our organisation but to grow and find

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

new ways to support our members. After developing our

stepping down from the Treasurerís role. Hayley has done

first fundraising plan we are now implementing the plan

an amazing job managing the finances of our organisation

and we have already seen growth in donations.

and the old saying of ëif you want something done, ask a busy personí rings true for Hayley. I would also like to

Another major achievement in the past year was

acknowledge the wonderful work of our regional contacts

the subsidy of the medicine Everolimus through the

the very important work they do in keeping people

pharmaceutical benefits scheme (PBS). Everolimus is now

connected all around Australia and all of the volunteers

approved in Australia for the treatment of SEGAs and

that support our organisation.

kidney angiomyolipomas and its inclusion on the PBS will improve access to this medication and support clinicians

Few of the achievements of this year would have

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

happened without the great work of our Project Manager

to thank the families who made personal submissions to

Clare Stuart. Clare returned from maternity leave late last

the PBAC. We were informed your submissions along with

year and her dedication and experience is invaluable. She

ours had a big impact on the PBAC who are responsible

has been the driving force in improving what we do and

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

growing to support the diverse needs of our members.

making a difference for people living with TSC.

Most importantly thank you to all the donors, fundraisers

Educational events are an important part of what we

and business supporters who contributed during this year.

do and our goal of hosting events around the country

Without your generous donations we would not be able

has been very successful. After a successful conference

to do the work we do.

in Perth in early 2013 we hosted an information day in

I look forward to an exciting future for Tuberous Sclerosis

Melbourne. Dr Chris Kingswood, a very experienced


nephrologist from the UK who specialises in TSC,

- Debbie Crosby, President

presented along with Dr Simon Harvey from the Royal Childrenís Hospital. These events provide opportunities for families to get the most up to date 3

Improved the TSC knowledge

Supported a new treatment for

of current and future health

facial angiofibromas by funding

professionals by presenting

the extension phase to the

lectures for Epilepsy Action, Sydney

international clinical trial into the

University Genetic Counselling

use of topical rapamycin. Facial

Students and the Queensland Centre

angiofobromas are a disfiguring

for Intellectual Disability.

skin condition experienced by up to 90% of people with TSC and

Encouraged GPs to update their

this new medicine is shrinking

TSC knowledge by completing the

these skin tumours and providing

new BMJ elearning module. Our flyer

an alternative to painful and

was distributed to families to give

expensive laser surgery.

to their primary care doctors and Advocated for the availability


of pre-implantation genetic Hosted information events in

diagnosis (PGD) for Tuberous

Sydney, Melbourne and Perth,

Sclerosis and other genetic

attended by more than 50 people.

diseases to the Medicare Services Advisory Committee (MSAC)

Published two issues of Reach

Celebrated the listing

Out, full of valuable information and

of Everolimus on the

stories from people affected by TSC

Pharmaceuitcal Benefits Scheme,

that ease feelings of isolation.

the first treatment specific to Tuberous Sclerosis.

Authored two new information pages: mTOR inhibitor medicines

Strengthened our relationships

and genetic testing. This brings our

with peak organisations to

total collection to 12 pages of high

increase their understanding of

quality information fully reviewed by

the complex care needs of people

health professionals.

with Tuberous Sclerosis.

Sent nine email newsletters to more than 250 subscribers, TSA works closely with

providing families and interested health professionals with accurate and up to date TSC information.


Research & Advocacy

Info Inf ffo form for o mattion tion

With your help we...


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.

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.


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.

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

There was limited support when I had my son 16 years ago. I felt isolated and overwhelmed‌ I went through his first 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

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 difficulties, 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.


Financial Overview Tuberous Sclerosis Australia recorded an overall surplus of $13,879.95 in 2013/14, influenced by: 33,908.65 funding provided to the clinical trial of topical rapamycin for facial angiofibromas. $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

Investment and other income


Where the money goes to

Fundraising Costs

General donations and membership fees




22% Education and support


Fundraising events






Fundraising Growth

Our position 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 2013/14

Approximately $25,000 reserved for remaining topical rapamycin research and advocacy work $10,000






Thank you Our work is made possible by the support of our donors and fundraisers. Major fundraising efforts 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

Our work with pharmaceutical companies 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 financially 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.


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

Profit and Loss: Year ended June 2014 June 2014

June 2013





Gold Supporter



Silver Supporter



Bronze Supporter



Income Donations Donation - Rapamycin

Lizzie’s Lunch Event





Interest Income



Grants Received





Promotional Products



2011 Family Conference Book & DVD



2012 Brisbane Seminar



2013 WA Conference Registration



2013 WA Conference Dinner



Committee Sitting Fees

2013 Melbourne Conference Registration

Seminar Day Registration Australian Government Paid Parental Leave Total Income











Expenses NSW Fair Trading Fees QLD ACNCS Fee Fees to other Membership Comp



Everyday Hero Fee



Conference Registrations



2013 WA Conference Expenses



2103 Conference Travel/Accommodation Reimbursement







2013 WA Conference Catering Expense Seminar Day Expenses Melbourne 2013 Conference



Lizzie’s Lunch Catering



Rapamycin Trial Costs



Bank Charges



Eway Web Active Fees





Insurances PayPal Charges











Office Supplies


Profit and Loss: Year ended June 2014 cont. Expenses cont. Computer Programs IT System Maintenance Telephone Other Expenses Travel & Accommodation

June 2014

June 2013











Gifts & Awards



Educational Products



Fundraising Growth



Wages & Salaries



Australian Government Paid Parental Leave











Police Checks for Committee Superannuation Workers Compensation Publishing & Printing ReachOut Postage for ReachOut





Total Expenses



Operating Profit/(Loss)







Publishing and Printing Annual Report

Other Income Net Profit/(Loss)

Balance Sheet as at 30 June 2014 Assets General Cheque Account


PayPal Account


Investments Macquarie Cash Management Account


Macquarie Term Deposit - Matures 7/4/2015


CBA Cash Investment Account


Term Deposit - E Pinkerton Matures 19/5


CBA Term Deposit Matures 19/10/14


Total Assets


Liabilities Current Liabilites Gold Supporters in Advance


Silver Supporter in Advance


Bronze Supporter in Advance


Total Liabilities


Net Assets


Equity Retained Earnings


Current Earnings


Total Equity



Phone Email Website Facebook Mail

1300 733 435 (within Australia) 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 $2 and over are tax deductible

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

Tuberous Sclerosis Australia

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