Tuberous Sclerosis
Australia
Annual Report
2014-15
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.
Tuberous Sclerosis Australia
works to connect, inform and empower people affected by tuberous sclerosis complex as
we work towards a cure for TSC.
Our Team
Debbie Crosby, President
Patrick Norris, Treasurer
David Matheson, Secretary and editor of Reach Out
Kate Green, Committee Member
Hayley Hill, Committee Member
Georgina Schilg, Committee Member
Clare Stuart, General Manager
Sally Nicholson, Family Support Volunteer
Alice O’Donnell, TSC Professionals Network manager
Regional Contacts
A vital part of our volunteer team, the regional contacts live
throughout Australia and work with local families to share
information and experiences.
NSW:
WA:
QLD:
VIC:
TAS:
Janiffer Reynolds
Nicole Stone & Sue Williamson
Fiona Hiatt
Narelle Kerr
Georgina Schilg
TSA works with
Medical Advisors
Dr Sean Kennedy, Nephrologist
Dr John Lawson, Paediatric Neurologist
Dr David Mowat, Clinical Geneticist
Tuberous Sclerosis
Australia
2
Expanding our reach to
improve the wellbeing
of all people with TSC
Debbie Crosby, President and
Clare Stuart, General Manager
Fear. This is the emotion that we know can
overwhelm people when they are given a diagnosis
of tuberous sclerosis. While we know that TSC
affects everyone differently, there is no crystal
ball that can predict how any one person will be
affected. People with TSC and their families try to
live one day at a time, not knowing what medical,
financial, practical or emotional challenge is waiting
around the next corner.
This year Tuberous Sclerosis Australia helped
hundreds of families affected by TSC and with your
continued support we can help many more in the
future. Our achievements this past year include the
first ever TSC conference in New Zealand, social
events around the country, the development of
the TSC professionals network and our ongoing
education and family support work. You can find
more information about these activities in
this report.
Our donors and fundraisers are the fuel that
keeps our organisation working. Most of them
have a personal connection to tuberous sclerosis
– so while their choice to support our cause
is understandable, their dedication and energy
with which they do so is all the more admirable
because of their caring responsibilities. We’d like
to particularly acknowledge the efforts of Jeff and
Manoela Place from Sydney’s Northern Beaches.
Along with their family and friends and in honour of
their daughter Zarah, they created the TSC Heroes
triathlon team and raised more than $45,000 to
help other families with TSC. We love supporting
our fundraisers so please give us a call or send an
email if you want to get involved.
TSA is a small organisation that achieves a lot.
The reason we are able to keep our costs so low
is our volunteers. Our management committee
is responsible for the governance and leadership
of TSA but also takes an active role, particularly in
3
connecting with families and in fundraising. This year
we published the 100th issue of our magazine Reach
Out, so I would particularly like to acknowledge the
commitment of David Matheson who has long been
both the editor of Reach Out and the secretary of
TSA. We also want to thank Kate Norris who was TSA’s
vice-president until her resignation this year. Kate has
made a big impact on TSA while in this role and we are
a stronger organisation because of this.
Beyond the committee we would like to thank Alice
O’Donnell, Megan Lacoba and Chris Burgoyne for
volunteering their time this year. Megan’s work helped
to ease us through our change of name and improved
our communications and Chris provided some much
needed technical help to launch our new website
in late 2014, using his volunteer leave through his
employer Google. Alice’s ongoing leadership of the
TSC Professional’s Network has ensured this important
part of our work has grown consistently this year.
We have taken some time to refocus our priorities this
year. This builds on the results of the 2014 TSC Family
Survey, which identified the key challenges faced by
people with TSC in Australia. We have formulated six
strategic objectives that include particular focus on
our work with health professionals and expanding TSC
research in Australia.
Up to 50 families were given a diagnosis of tuberous
sclerosis this year, adding to the thousands that
already live with the impacts of this challenging
disease. Tuberous Sclerosis Australia has been able to
reduce the isolation they feel and improve the health
services they receive. We look forward to working
with you to continue this work this year.
Tub
With your help we...
Education and Support
Directly helped more than 80 families through
our phone and email support service.
It really made my day talking to
someone who knows the struggles that
go along with living with TSC. I want to
thank you for taking the time to call me
and reach out to me, I am truly grateful
for your call. You have reminded me
that I have lots of options to choose
from when it comes to pregnancy and
children and ultimately, a family.
- Jodi, who has TSC
Held the first TSC meeting in New Zealand
and launched Tuberous Sclerosis Complex New
Zealand, our new partners for tackling TSC in
Australasia. 48 people came to the two day
meeting and four new TSC educational videos are
available online.
To be a well informed, connected and
supported TSC parent is the best gift we
can give our TSC affected children.
- Hannah, whose child has TSC
Published the 100th (and 101st) issue of Reach
Out, our magazine that provides up to date
TSC information and shares the challenges and
triumphs of living with TSC.
With a son with TSC, it was great to have
him here to learn as a family what he has,
how to work with it and how to get on
with life.
- Andre, whose adult son has TSC
Tuberous Sclerosis
Australia
4
Held educational events for medical specialists
and families in Sydney and Brisbane with a focus
on best practice for managing TSC kidneys.
Expanded our information resources, adding
new information on managing the financial
aspects of TSC, using facebook for TSC
information and support and the new TAND
checklist for recognising the learning, behaviour
and mental health impacts of TSC. We’ve also
updated several of our information pages
to reflect new treatment and management
guidelines.
Hosted global awareness day picnics around
Australia giving local families a chance to connect
and share their experiences with TSC.
Facilitated peer support through our active
facebook discussion group. The group has more
than 324 members and more than 300 topics
were discussed during the year.
Research & Advocacy
Established the TSC Professionals Network,
connecting with specialist health professionals
around Australia. This recognises their interest in
TSC, improves communication and helps us refer
people with TSC to TSC expert doctors.
Shared the impact of TSC in Australia from our
TSC Family Survey, as input to the TSC research
plan from the National Institutes of Health (USA),
and as a poster at the international TSC research
conference in the UK.
Recognised the dedication of Dr Sean Kennedy,
a kidney specialist, to his TSC patients by awarding
him the 2014 Elizabeth Pinkerton Memorial Award.
Completed funding the clinical trial into a new
treatment for the skin tumours experienced by 90%
of people with TSC.
Provided new funding to understand the financial
burden experienced by families with a child with
TSC through a new Sydney University study.
Supported recruitment to research projects
examining the psychological aspects of TSC.
Collaborated with TSC organisations around the
world to understand approaches for improving
care for people with TSC.
Awareness
Shared 31 Facts about TSC and #IAMTSC on social
media for TSC Global Awareness Day on May 15th
Our community raised awareness of TSC through
newspaper articles, TV segments, and a Queensland
Theatre Company play.
5
Tub
Our strategy
What’s ahead for TSA
Building on our successes and the results of our TSC family survey in 2014, we’ve set our sights on these strategic
objectives for 2015-2020. You can read more on our website www.tsa.org.au/about-us/strategic-plan
1.
Improve health services for
people with TSC
Encourage the provision of best practice care
for people with TSC, particularly in multidisciplinary
teams and through following the
guidelines for management of TSC
Work towards equitable access to TSC
medicines and other treatments
Influence policy in key areas that affect
people with TSC and their families
Encourage the interest and expertise of
health professionals in TSC through the TSC
professionals network
4.
Provide direct support
and facilitate peer
support for people
affected by TSC
Provide a TSC Information service
that can listen, answer questions and
connect people to services that can
help them.
Connect people affected by TSC to
professionals and services that can help
them
Provide opportunities for people with
TSC to connect online and face to face
2.
Encourage research into TSC
Directly fund research, particularly in
Australia
Encourage funding for research from other
sources
5.
Encourage fundraising activities that
provide peer support opportunities
Ensure sustainable
funding for our work
Represent the voice of the patients in
research planning and design
Increase our fundraising reach into the
networks of those affected by TSC
Assist with recruitment to research studies
Promote research projects and outcomes
Secure project specific grant funding to
expand our services
3.
Publish and promote TSC
information
Publish accurate, balanced and up to date
information about TSC
Hold TSC information events for people with
TSC, their families and health professionals.
Publish and promote information relevant
for people living with TSC, their families and
professionals
6.
Grow TSA as a reputable,
well-governed
organisation
Adopt governance practices that
uphold responsibility, accountability,
transparency and compliance.
Develop and implement our people
strategy.
Share TSC information through various
channels including: face-to-face, printed,
website, social media, email
Tuberous Sclerosis
Australia
6
Financial Overview
Tuberous Sclerosis Australia produced a surplus of
$34,033 in 2014/15, positioning us well for future
growth. Our retained earnings include funds that
are earmarked for the following projects:
Income and Expenditure
Where the money comes from
$42,000 for 2015 Australian TSC Conference
being held in November
$2,500 for TSC International project to share
approaches to improving care for people with
TSC around the world
$2,000 for the in progress Sydney University
APSU Out of Pocket costs study
Resulting in true reserves of $244,266.48, a
position $30,000 better than at the end of the
previous year. The fundraising efforts of the TSC
Heroes team and the Surfside group have been
critical in achieving this financial result.
Where the money goes to
Fundraising Growth
Did you know?
TSA volunteers
contributed
more than 800
hours this year,
contributing more
than $20,000 of
value to TSA.
Categories
Accountability and
administration:
The costs of running the
organisation efficiently, including:
insurance premiums, finance, IT,
office expenses, and reporting to
the TSA management committee.
Research: Final costs of the topical
rapamycin clinical trial being
Tuberous Sclerosis
conducted by Sydney Children’s
Hospital and a grant to Sydney
University for a study on the out
of pocket costs experienced by
families with a child with TSC.
Fundraising: The time to support
community fundraisers and
organise TSA-run fundraising
events and campaigns. This
includes promotional and thank
you materials and fundraising team
uniforms.
Australia
8
Education and support: Costs
associated with providing
information to people affected by
TSC, writing and updating our TSC
information pages, our resource
directory and publishing Reach
Out.
Advocacy: Time spent working
with policy makers in health and
disability to improve the care
available to people with TSC.
Thank you
Our fundraising targets were exceeded this year.
We are grateful for the time, energy and money
contributed by our fundraisers and their supporters.
The TSC Heroes team, led by the amazing family
of Zarah Place, entered 23 athletes in the Forster
Triathlon and raised $44,667 in total.
The Surfside community, led by Ian and Sharron
Bilsborough and inspired by Kyah McGroder,
organised a golf and lawn bowls event that raised
$9,140.
TSA held the second annual Lizzie’s Lunch in
honour of Lizzie Pinkerton, raising $7,290 after
costs.
The family and friends of Maryanne Madden raised
a total of $5,350 in her memory.
The generosity of all of our donors and fundraisers
has both supported our work this year and will allow
us to achieve even more in 2015/16.
Our work with pharmaceutical companies
During this year we have collaborated with Novartis and other pharmaceutical companies in a
number of ways:
Novartis provided an educational grant of $45,000 for the combined medical and family
conference being held in Sydney in November 2015.
Clare Stuart completed her role on the steering committee for the Working Together Guide,
a joint project of Consumer’s Health Forum and Medicines Australia. You can find out more at
http://workingtogetherguide.com.au
TSA was represented by Debbie Crosby and Clare Stuart at a meeting of TSC specialist health
professionals hosted by Novartis in October 2014. Novartis provided travel and catering for this
event.
Clare Stuart volunteered her time as chair of the steering committee for the Health Consumer
Advocacy workshop. This group organises networking and skill building events for small health
consumer organisations and these are sponsored by a group of six pharmaceutical companies.
Clare and Debbie Crosby attended the HCA workshop in 2015.
Our policy on working with pharmaceutical companies describes how we maintain our
independence and integrity. This policy is available on our website or can be provided on request.
We encourage you to contact us for more information.
9
Tub
Financial Statements
The accounts for 2014/15 were reviewed by Rachel Goddard CA (member 72291). A copy of her report is
available on request. The accounts of TSA now follow the National Standard Chart of Accounts published by
the Australian Charities and Not-for-profits Commission.
Profit and Loss: Year ended June 2015
INCOME
Contributions from members - Bronze $1,190.00
Contributions from members - Silver $1,100.00
Contributions from members - Gold $10,308.55
Donations Received $66,742.11
Educational Event Fees $2,106.05
Fundraising Event Fees $6,490.00
Grants Received $48,120.10
Income From Raffles $1,915.00
Interest Income $5,226.03
Sales of Goods $1,076.90
Sitting Fees $1,225.60
Total Income $145,500.34
GROSS PROFIT $145,500.34
LESS OPERATING EXPENSES
Accounting Fees $2,673.00
Advertising and Promotion $638.38
Bank Charges $759.07
Board/Governance Expenses $234.94
Credit Card Fees $1,984.35
Educational Event Expenses $9,287.69
Fundraising Event Expenses $4,879.07
Fundraising Expenses $1,917.84
Information Technology Expenses $5,643.75
Insurance Expense $2,184.45
Membership Fees Paid $150.00
Postage, Freight and Courier $809.97
Printing & Stationery $2,963.70
Publications and Information Resources $7,114.25
Rapamycin Trial Costs $1,582.20
Research Grants Awarded $29,783.17
Salaries and Wages $16,461.53
Salaries and Wages - Salary Sacrifice $13,468.53
Salaries and Wages - Superannuation $3,303.79
Sundry Expenses $626.65
Telephone, Fax and Internet $440.36
Travel & Accommodation $3,688.02
Volunteer Costs $762.54
Total Operating Expenses $111,357.25
NET PROFIT $34,143.09
Tuberous Sclerosis
Australia
10
Balance Sheet as at 30 June 2015
ASSETS
CURRENT ASSETS
Cash at Bank - Restricted
Term Deposit - E Pinkerton $5,110.09
Cash at Bank - Unrestricted
CBA Cash Investment Account $79,998.23
General Cheque Account $11,384.90
Macquarie Cash Management Account $19,071.85
Short term investments
Macquarie Term Deposit - Maturing 2 August 2015 $125,000.00
Macquarie Term Deposit - Maturing 7 April 2016 $54,860.73
TOTAL ASSETS $295,425.80
LIABILITIES
CURRENT LIABILITIES
PAYG Withholding Payable $963.00
Rounding -$0.01
Superannuation Payable $831.24
Grant Payable (Sydney University Out of Pocket Expenses Study) $2,745.00
TOTAL LIABILITIES $4,539.23
EQUITY
CURRENT EQUITY
Current Year Earnings $34,143.09
Retained Surplus $256,743.48
TOTAL EQUITY $290,886.57
11
Tub
Phone
Email
Website
Facebook
Mail
1300 733 435 (within Australia)
info@tsa.org.au
www.tsa.org.au
www.facebook.com/AuTSC
Tuberous Sclerosis Australia
17 Linksview Rd, Springwood
NSW 2777 Australia
ABN 20 681 174 734
Incorporated association in New South Wales, incorporation no. Y 07116-42.
Registered charity with the Australian Charities and Not-for-Profits
Commission from 3 December 2013. Public benevolent institution (PBI) and
endorsed by the Australian Taxation Office as a deductible gift recipient (DGR)
and an income tax exempt charity. We fundraise throughout Australia and are
registered under fundraising legislation as required.
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
Change language