Annual report 2014-15-Final

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Tuberous Sclerosis<br />

Australia<br />

<strong>Annual</strong> Report<br />


Tuberous Sclerosis Complex (TSC)<br />

affects more than 2000 individuals in Australia and thousands more carers, families and<br />

friends who live with the impact of the disease.<br />

TSC tumours can grow in any organ of the body, commonly affecting the brain, skin, heart,<br />

lungs and kidneys. TSC can cause epilepsy, developmental delay and autism. There is no<br />

known cure for TSC.<br />

Tuberous Sclerosis Australia<br />

works to connect, inform and empower people affected by tuberous sclerosis complex as<br />

we work towards a cure for TSC.<br />

Our Team<br />

Debbie Crosby, President<br />

Patrick Norris, Treasurer<br />

David Matheson, Secretary and editor of Reach Out<br />

Kate Green, Committee Member<br />

Hayley Hill, Committee Member<br />

Georgina Schilg, Committee Member<br />

Clare Stuart, General Manager<br />

Sally Nicholson, Family Support Volunteer<br />

Alice O’Donnell, TSC Professionals Network manager<br />

Regional Contacts<br />

A vital part of our volunteer team, the regional contacts live<br />

throughout Australia and work with local families to share<br />

information and experiences.<br />

NSW:<br />

WA:<br />

QLD:<br />

VIC:<br />

TAS:<br />

Janiffer Reynolds<br />

Nicole Stone & Sue Williamson<br />

Fiona Hiatt<br />

Narelle Kerr<br />

Georgina Schilg<br />

TSA works with<br />

Medical Advisors<br />

Dr Sean Kennedy, Nephrologist<br />

Dr John Lawson, Paediatric Neurologist<br />

Dr David Mowat, Clinical Geneticist<br />

Tuberous Sclerosis<br />

Australia<br />


Expanding our reach to<br />

improve the wellbeing<br />

of all people with TSC<br />

Debbie Crosby, President and<br />

Clare Stuart, General Manager<br />

Fear. This is the emotion that we know can<br />

overwhelm people when they are given a diagnosis<br />

of tuberous sclerosis. While we know that TSC<br />

affects everyone differently, there is no crystal<br />

ball that can predict how any one person will be<br />

affected. People with TSC and their families try to<br />

live one day at a time, not knowing what medical,<br />

financial, practical or emotional challenge is waiting<br />

around the next corner.<br />

This year Tuberous Sclerosis Australia helped<br />

hundreds of families affected by TSC and with your<br />

continued support we can help many more in the<br />

future. Our achievements this past year include the<br />

first ever TSC conference in New Zealand, social<br />

events around the country, the development of<br />

the TSC professionals network and our ongoing<br />

education and family support work. You can find<br />

more information about these activities in<br />

this <strong>report</strong>.<br />

Our donors and fundraisers are the fuel that<br />

keeps our organisation working. Most of them<br />

have a personal connection to tuberous sclerosis<br />

– so while their choice to support our cause<br />

is understandable, their dedication and energy<br />

with which they do so is all the more admirable<br />

because of their caring responsibilities. We’d like<br />

to particularly acknowledge the efforts of Jeff and<br />

Manoela Place from Sydney’s Northern Beaches.<br />

Along with their family and friends and in honour of<br />

their daughter Zarah, they created the TSC Heroes<br />

triathlon team and raised more than $45,000 to<br />

help other families with TSC. We love supporting<br />

our fundraisers so please give us a call or send an<br />

email if you want to get involved.<br />

TSA is a small organisation that achieves a lot.<br />

The reason we are able to keep our costs so low<br />

is our volunteers. Our management committee<br />

is responsible for the governance and leadership<br />

of TSA but also takes an active role, particularly in<br />

3<br />

connecting with families and in fundraising. This year<br />

we published the 100th issue of our magazine Reach<br />

Out, so I would particularly like to acknowledge the<br />

commitment of David Matheson who has long been<br />

both the editor of Reach Out and the secretary of<br />

TSA. We also want to thank Kate Norris who was TSA’s<br />

vice-president until her resignation this year. Kate has<br />

made a big impact on TSA while in this role and we are<br />

a stronger organisation because of this.<br />

Beyond the committee we would like to thank Alice<br />

O’Donnell, Megan Lacoba and Chris Burgoyne for<br />

volunteering their time this year. Megan’s work helped<br />

to ease us through our change of name and improved<br />

our communications and Chris provided some much<br />

needed technical help to launch our new website<br />

in late <strong>2014</strong>, using his volunteer leave through his<br />

employer Google. Alice’s ongoing leadership of the<br />

TSC Professional’s Network has ensured this important<br />

part of our work has grown consistently this year.<br />

We have taken some time to refocus our priorities this<br />

year. This builds on the results of the <strong>2014</strong> TSC Family<br />

Survey, which identified the key challenges faced by<br />

people with TSC in Australia. We have formulated six<br />

strategic objectives that include particular focus on<br />

our work with health professionals and expanding TSC<br />

research in Australia.<br />

Up to 50 families were given a diagnosis of tuberous<br />

sclerosis this year, adding to the thousands that<br />

already live with the impacts of this challenging<br />

disease. Tuberous Sclerosis Australia has been able to<br />

reduce the isolation they feel and improve the health<br />

services they receive. We look forward to working<br />

with you to continue this work this year.<br />


With your help we...<br />

Education and Support<br />

Directly helped more than 80 families through<br />

our phone and email support service.<br />

It really made my day talking to<br />

someone who knows the struggles that<br />

go along with living with TSC. I want to<br />

thank you for taking the time to call me<br />

and reach out to me, I am truly grateful<br />

for your call. You have reminded me<br />

that I have lots of options to choose<br />

from when it comes to pregnancy and<br />

children and ultimately, a family.<br />

- Jodi, who has TSC<br />

Held the first TSC meeting in New Zealand<br />

and launched Tuberous Sclerosis Complex New<br />

Zealand, our new partners for tackling TSC in<br />

Australasia. 48 people came to the two day<br />

meeting and four new TSC educational videos are<br />

available online.<br />

To be a well informed, connected and<br />

supported TSC parent is the best gift we<br />

can give our TSC affected children.<br />

- Hannah, whose child has TSC<br />

Published the 100th (and 101st) issue of Reach<br />

Out, our magazine that provides up to date<br />

TSC information and shares the challenges and<br />

triumphs of living with TSC.<br />

With a son with TSC, it was great to have<br />

him here to learn as a family what he has,<br />

how to work with it and how to get on<br />

with life.<br />

- Andre, whose adult son has TSC<br />

Tuberous Sclerosis<br />

Australia<br />

4<br />

Held educational events for medical specialists<br />

and families in Sydney and Brisbane with a focus<br />

on best practice for managing TSC kidneys.<br />

Expanded our information resources, adding<br />

new information on managing the financial<br />

aspects of TSC, using facebook for TSC<br />

information and support and the new TAND<br />

checklist for recognising the learning, behaviour<br />

and mental health impacts of TSC. We’ve also<br />

updated several of our information pages<br />

to reflect new treatment and management<br />

guidelines.<br />

Hosted global awareness day picnics around<br />

Australia giving local families a chance to connect<br />

and share their experiences with TSC.<br />

Facilitated peer support through our active<br />

facebook discussion group. The group has more<br />

than 324 members and more than 300 topics<br />

were discussed during the year.

Research & Advocacy<br />

Established the TSC Professionals Network,<br />

connecting with specialist health professionals<br />

around Australia. This recognises their interest in<br />

TSC, improves communication and helps us refer<br />

people with TSC to TSC expert doctors.<br />

Shared the impact of TSC in Australia from our<br />

TSC Family Survey, as input to the TSC research<br />

plan from the National Institutes of Health (USA),<br />

and as a poster at the international TSC research<br />

conference in the UK.<br />

Recognised the dedication of Dr Sean Kennedy,<br />

a kidney specialist, to his TSC patients by awarding<br />

him the <strong>2014</strong> Elizabeth Pinkerton Memorial Award.<br />

Completed funding the clinical trial into a new<br />

treatment for the skin tumours experienced by 90%<br />

of people with TSC.<br />

Provided new funding to understand the financial<br />

burden experienced by families with a child with<br />

TSC through a new Sydney University study.<br />

Supported recruitment to research projects<br />

examining the psychological aspects of TSC.<br />

Collaborated with TSC organisations around the<br />

world to understand approaches for improving<br />

care for people with TSC.<br />

Awareness<br />

Shared 31 Facts about TSC and #IAMTSC on social<br />

media for TSC Global Awareness Day on May <strong>15</strong>th<br />

Our community raised awareness of TSC through<br />

newspaper articles, TV segments, and a Queensland<br />

Theatre Company play.<br />

5<br />


Our strategy<br />

What’s ahead for TSA<br />

Building on our successes and the results of our TSC family survey in <strong>2014</strong>, we’ve set our sights on these strategic<br />

objectives for 20<strong>15</strong>-2020. You can read more on our website www.tsa.org.au/about-us/strategic-plan<br />

1.<br />

Improve health services for<br />

people with TSC<br />

Encourage the provision of best practice care<br />

for people with TSC, particularly in multidisciplinary<br />

teams and through following the<br />

guidelines for management of TSC<br />

Work towards equitable access to TSC<br />

medicines and other treatments<br />

Influence policy in key areas that affect<br />

people with TSC and their families<br />

Encourage the interest and expertise of<br />

health professionals in TSC through the TSC<br />

professionals network<br />

4.<br />

Provide direct support<br />

and facilitate peer<br />

support for people<br />

affected by TSC<br />

Provide a TSC Information service<br />

that can listen, answer questions and<br />

connect people to services that can<br />

help them.<br />

Connect people affected by TSC to<br />

professionals and services that can help<br />

them<br />

Provide opportunities for people with<br />

TSC to connect online and face to face<br />

2.<br />

Encourage research into TSC<br />

Directly fund research, particularly in<br />

Australia<br />

Encourage funding for research from other<br />

sources<br />

5.<br />

Encourage fundraising activities that<br />

provide peer support opportunities<br />

Ensure sustainable<br />

funding for our work<br />

Represent the voice of the patients in<br />

research planning and design<br />

Increase our fundraising reach into the<br />

networks of those affected by TSC<br />

Assist with recruitment to research studies<br />

Promote research projects and outcomes<br />

Secure project specific grant funding to<br />

expand our services<br />

3.<br />

Publish and promote TSC<br />

information<br />

Publish accurate, balanced and up to date<br />

information about TSC<br />

Hold TSC information events for people with<br />

TSC, their families and health professionals.<br />

Publish and promote information relevant<br />

for people living with TSC, their families and<br />

professionals<br />

6.<br />

Grow TSA as a reputable,<br />

well-governed<br />

organisation<br />

Adopt governance practices that<br />

uphold responsibility, accountability,<br />

transparency and compliance.<br />

Develop and implement our people<br />

strategy.<br />

Share TSC information through various<br />

channels including: face-to-face, printed,<br />

website, social media, email<br />

Tuberous Sclerosis<br />

Australia<br />


Financial Overview<br />

Tuberous Sclerosis Australia produced a surplus of<br />

$34,033 in <strong>2014</strong>/<strong>15</strong>, positioning us well for future<br />

growth. Our retained earnings include funds that<br />

are earmarked for the following projects:<br />

Income and Expenditure<br />

Where the money comes from<br />

$42,000 for 20<strong>15</strong> Australian TSC Conference<br />

being held in November<br />

$2,500 for TSC International project to share<br />

approaches to improving care for people with<br />

TSC around the world<br />

$2,000 for the in progress Sydney University<br />

APSU Out of Pocket costs study<br />

Resulting in true reserves of $244,266.48, a<br />

position $30,000 better than at the end of the<br />

previous year. The fundraising efforts of the TSC<br />

Heroes team and the Surfside group have been<br />

critical in achieving this financial result.<br />

Where the money goes to<br />

Fundraising Growth<br />

Did you know?<br />

TSA volunteers<br />

contributed<br />

more than 800<br />

hours this year,<br />

contributing more<br />

than $20,000 of<br />

value to TSA.<br />

Categories<br />

Accountability and<br />

administration:<br />

The costs of running the<br />

organisation efficiently, including:<br />

insurance premiums, finance, IT,<br />

office expenses, and <strong>report</strong>ing to<br />

the TSA management committee.<br />

Research: <strong>Final</strong> costs of the topical<br />

rapamycin clinical trial being<br />

Tuberous Sclerosis<br />

conducted by Sydney Children’s<br />

Hospital and a grant to Sydney<br />

University for a study on the out<br />

of pocket costs experienced by<br />

families with a child with TSC.<br />

Fundraising: The time to support<br />

community fundraisers and<br />

organise TSA-run fundraising<br />

events and campaigns. This<br />

includes promotional and thank<br />

you materials and fundraising team<br />

uniforms.<br />

Australia<br />

8<br />

Education and support: Costs<br />

associated with providing<br />

information to people affected by<br />

TSC, writing and updating our TSC<br />

information pages, our resource<br />

directory and publishing Reach<br />

Out.<br />

Advocacy: Time spent working<br />

with policy makers in health and<br />

disability to improve the care<br />

available to people with TSC.

Thank you<br />

Our fundraising targets were exceeded this year.<br />

We are grateful for the time, energy and money<br />

contributed by our fundraisers and their supporters.<br />

The TSC Heroes team, led by the amazing family<br />

of Zarah Place, entered 23 athletes in the Forster<br />

Triathlon and raised $44,667 in total.<br />

The Surfside community, led by Ian and Sharron<br />

Bilsborough and inspired by Kyah McGroder,<br />

organised a golf and lawn bowls event that raised<br />

$9,140.<br />

TSA held the second annual Lizzie’s Lunch in<br />

honour of Lizzie Pinkerton, raising $7,290 after<br />

costs.<br />

The family and friends of Maryanne Madden raised<br />

a total of $5,350 in her memory.<br />

The generosity of all of our donors and fundraisers<br />

has both supported our work this year and will allow<br />

us to achieve even more in 20<strong>15</strong>/16.<br />

Our work with pharmaceutical companies<br />

During this year we have collaborated with Novartis and other pharmaceutical companies in a<br />

number of ways:<br />

Novartis provided an educational grant of $45,000 for the combined medical and family<br />

conference being held in Sydney in November 20<strong>15</strong>.<br />

Clare Stuart completed her role on the steering committee for the Working Together Guide,<br />

a joint project of Consumer’s Health Forum and Medicines Australia. You can find out more at<br />

http://workingtogetherguide.com.au<br />

TSA was represented by Debbie Crosby and Clare Stuart at a meeting of TSC specialist health<br />

professionals hosted by Novartis in October <strong>2014</strong>. Novartis provided travel and catering for this<br />

event.<br />

Clare Stuart volunteered her time as chair of the steering committee for the Health Consumer<br />

Advocacy workshop. This group organises networking and skill building events for small health<br />

consumer organisations and these are sponsored by a group of six pharmaceutical companies.<br />

Clare and Debbie Crosby attended the HCA workshop in 20<strong>15</strong>.<br />

Our policy on working with pharmaceutical companies describes how we maintain our<br />

independence and integrity. This policy is available on our website or can be provided on request.<br />

We encourage you to contact us for more information.<br />

9<br />


Financial Statements<br />

The accounts for <strong>2014</strong>/<strong>15</strong> were reviewed by Rachel Goddard CA (member 72291). A copy of her <strong>report</strong> is<br />

available on request. The accounts of TSA now follow the National Standard Chart of Accounts published by<br />

the Australian Charities and Not-for-profits Commission.<br />

Profit and Loss: Year ended June 20<strong>15</strong><br />

INCOME<br />

Contributions from members - Bronze $1,190.00<br />

Contributions from members - Silver $1,100.00<br />

Contributions from members - Gold $10,308.55<br />

Donations Received $66,742.11<br />

Educational Event Fees $2,106.05<br />

Fundraising Event Fees $6,490.00<br />

Grants Received $48,120.10<br />

Income From Raffles $1,9<strong>15</strong>.00<br />

Interest Income $5,226.03<br />

Sales of Goods $1,076.90<br />

Sitting Fees $1,225.60<br />

Total Income $145,500.34<br />

GROSS PROFIT $145,500.34<br />


Accounting Fees $2,673.00<br />

Advertising and Promotion $638.38<br />

Bank Charges $759.07<br />

Board/Governance Expenses $234.94<br />

Credit Card Fees $1,984.35<br />

Educational Event Expenses $9,287.69<br />

Fundraising Event Expenses $4,879.07<br />

Fundraising Expenses $1,917.84<br />

Information Technology Expenses $5,643.75<br />

Insurance Expense $2,184.45<br />

Membership Fees Paid $<strong>15</strong>0.00<br />

Postage, Freight and Courier $809.97<br />

Printing & Stationery $2,963.70<br />

Publications and Information Resources $7,114.25<br />

Rapamycin Trial Costs $1,582.20<br />

Research Grants Awarded $29,783.17<br />

Salaries and Wages $16,461.53<br />

Salaries and Wages - Salary Sacrifice $13,468.53<br />

Salaries and Wages - Superannuation $3,303.79<br />

Sundry Expenses $626.65<br />

Telephone, Fax and Internet $440.36<br />

Travel & Accommodation $3,688.02<br />

Volunteer Costs $762.54<br />

Total Operating Expenses $111,357.25<br />

NET PROFIT $34,143.09<br />

Tuberous Sclerosis<br />

Australia<br />


Balance Sheet as at 30 June 20<strong>15</strong><br />

ASSETS<br />


Cash at Bank - Restricted<br />

Term Deposit - E Pinkerton $5,110.09<br />

Cash at Bank - Unrestricted<br />

CBA Cash Investment Account $79,998.23<br />

General Cheque Account $11,384.90<br />

Macquarie Cash Management Account $19,071.85<br />

Short term investments<br />

Macquarie Term Deposit - Maturing 2 August 20<strong>15</strong> $125,000.00<br />

Macquarie Term Deposit - Maturing 7 April 2016 $54,860.73<br />

TOTAL ASSETS $295,425.80<br />



PAYG Withholding Payable $963.00<br />

Rounding -$0.01<br />

Superannuation Payable $831.24<br />

Grant Payable (Sydney University Out of Pocket Expenses Study) $2,745.00<br />

TOTAL LIABILITIES $4,539.23<br />

EQUITY<br />


Current Year Earnings $34,143.09<br />

Retained Surplus $256,743.48<br />

TOTAL EQUITY $290,886.57<br />

11<br />


Phone<br />

Email<br />

Website<br />

Facebook<br />

Mail<br />

1300 733 435 (within Australia)<br />

info@tsa.org.au<br />

www.tsa.org.au<br />

www.facebook.com/AuTSC<br />

Tuberous Sclerosis Australia<br />

17 Linksview Rd, Springwood<br />

NSW 2777 Australia<br />

ABN 20 681 174 734<br />

Incorporated association in New South Wales, incorporation no. Y 07116-42.<br />

Registered charity with the Australian Charities and Not-for-Profits<br />

Commission from 3 December 2013. Public benevolent institution (PBI) and<br />

endorsed by the Australian Taxation Office as a deductible gift recipient (DGR)<br />

and an income tax exempt charity. We fundraise throughout Australia and are<br />

registered under fundraising legislation as required.<br />

Registered Charity CC25313<br />

CFN 13968<br />

Donations of $2<br />

and over are<br />

tax deductible<br />

We think all families with TSC<br />

should have someone to turn to.<br />

Help us make this a reality.<br />

Tuberous Sclerosis<br />


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