Annual report 2014-15-Final
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Tuberous Sclerosis<br />
Australia<br />
<strong>Annual</strong> Report<br />
<strong>2014</strong>-<strong>15</strong>
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 />
2
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 />
Tub
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 />
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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 />
6
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 />
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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 />
LESS OPERATING EXPENSES<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 />
10
Balance Sheet as at 30 June 20<strong>15</strong><br />
ASSETS<br />
CURRENT 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 />
LIABILITIES<br />
CURRENT LIABILITIES<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 EQUITY<br />
Current Year Earnings $34,143.09<br />
Retained Surplus $256,743.48<br />
TOTAL EQUITY $290,886.57<br />
11<br />
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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 />
Australia