Tuberous Sclerosis Australia Annual Report 2015-16

Tuberous Sclerosis
Australia
Annual Report
2015-16

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
Alison McIvor, Secretary
Adish Chandra, Committee Member
Hayley Hill, Committee Member
Michael Jones, Committee Member
Michelle Purkiss, Committee Member
Georgina Schilg, Committee Member
Clare Stuart, General Manager
Chelli Edri, Fundraising, Communications and Events Manager
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: Janiffer Reynolds and Sally Nicholson
WA: Nicole Stone
QLD: Fiona Hiatt, Fiona Crocker and Christie Herbert
VIC: Narelle Kerr
TAS: Georgina Schilg
Medical Advisors
Dr Sean Kennedy, Nephrologist
Dr John Lawson, Paediatric Neurologist
Dr David Mowat, Clinical Geneticist
TSA works with
Photos:
Top: Murray Leikis, Clare
Stuart and David Mowat
at the International TSC
Research Conference in
Windsor, UK.
Above: Debbie Crosby
with her Mum Maria and
her daughter Sophie at
Lizzies’s Lunch 2016.
Front cover photos:
Clockwise from top: Our
TSC Heroes team at HBF
Run for a Reason in Perth,
Liam from TAS, Lachlan
and Koby from QLD,
Matilda, VIC.
Tuberous Sclerosis
Australia
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President’s Report
Bringing together the
Australian TSC Community
From Debbie Crosby, President, and Clare Stuart,
General Manager
Tuberous Sclerosis Australia’s major project this
year was the 2015 Australian TSC Conference. This
event brought together health professionals, people
with TSC and their families to learn more about TSC
and set goals for what our community can achieve
together. Some people met others living with TSC for
the first time ever. Stories were shared and friendships
started.
Photo: Debbie and Clare
When TSA was founded in 1981 most people with
tuberous sclerosis had never met another person
with the condition. Picnic days were expanded to
seminar days and family weekends. Combined events
with health professionals have proven a successful
approach to sharing TSC information and building
relationships. In the coming year we will seek to
improve access to our events by piloting webinarstyle
online education events. Bringing the Australian
TSC community together is still at the core of what
we do.
Our mission is to connect, inform and empower
people affected by tuberous sclerosis complex as
we work towards a cure for TSC. This annual report
describes our achievements and highlights of the past
year and where we are headed in the future.
We’d like to thank our staff team this year. Clare
Stuart, our general manager, has done outstanding
work this year and her commitment and passion for
TSA is always evident. We are excited to welcome
Chelli Edri, our new Fundraising, Communications
and Events Manager. We look forward to working
with Chelli and achieving our fundraising goals.
Our volunteer team is vital to TSA’s success. Last year
we had four new management committee members
join us: Michael Jones (NSW), Michelle Purkiss
(NSW), Jodie Conduit (QLD) and Alison McIvor (VIC).
Thank you for bringing a new perspective and fresh
ideas to TSA, and particularly to Alison for taking on
the sizeable role of secretary. I would also like to
acknowledge the wonderful work of our volunteer
regional contacts the very important work they do in
keeping people connected all around Australia and all
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of the volunteers who support our organisation with
specific projects and administration.
We are grateful to the health professionals who donate
their time: as our medical advisors; by reviewing our
information pages; and speaking at our events. The
volunteer steering committee for our conference
designed a program for the medical stream that
engaged health professionals from multiple disciplines
and provided time for sharing perspectives and
ideas. Dr Elizabeth Thiele and Dr Lisa Henske who
travelled from the USA were fantastic and their talks
provided us with so much information, and their
passion and commitment as TSC specialists was
felt by everyone. Dr Thiele said she felt privileged
to attend the conference, and was impressed by
our small organisation bringing together so many
people affected by TSC and so many interested health
professionals.
Most importantly, thank you to all the fundraisers and
donors who contributed their time and money to TSA.
Without these generous donations TSA would not
be able to do the work it does. We would particularly
like to acknowledge Sue and Ross Pinkerton for
their organisation of Lizzie’s Lunch, now in its third
year raising over $16.000 for TSA, and their personal
contribution to the Lizzie Pinkerton Memorial Fund. All
of our fundraisers, and especially the TSC community
inspire and encourage others to support TSA.
We look forward to TSA continuing to bring together
the diverse Australian TSC community and welcome
all feedback and ideas. With your help we know it will
be another exciting year for TSA.
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Our 2015-2016 Achievements
Your support enabled us to
1.
Improve health services
for people with TSC
1. We brought together 35 TSC expert health
professionals in the medical stream of the 2015
Australian TSC Conference. They were joined by
overseas TSC experts to share latest research,
treatment approaches and future collaborations.
100% of our medical stream attendees said
they learnt something at the conference that
has changed the care they provide to their
patients with tuberous sclerosis
they would share their new knowledge with
their colleagues
they would recommend the conference
to others
Our next goals
Formally recognise our TSC Clinics in Australia
and continue our work supporting the development
of new multi-disciplinary models of health care for
people with TSC
Further improve access to topical mTOR
inhibitor treatment for all Australians who need it
Fill gaps in the TSC Professionals Network
working towards having full coverage around
Australia, across specialists
Enrich the TSC Professionals Network with email
communications and an online education event
2. Our co-sponsored session at Westmead
Children’s Hospital’s seminar brought more than
150 paediatricians up to date with best practice in
diagnosing and managing TSC. Dr Elizabeth Thiele
from The Herscot Centre for TSC.
3. Our TSC Professionals Network has grown
to 40 members around Australia and across many
medical specialties.
4. Fifth annual Elizabeth Pinkerton Memorial Award
given to Dr Anne Halbert, dermatologist in Perth,
recognising her pioneering research and advocacy
work with topical mTOR inhibitor treatment for TSC
facial angiofibromas.
Conference sponsors
5. Along with Queensland families, we advocated
for funding of topical mTOR inhibitor medicine by
QLD Health. We look forward to announcing good
news soon.
6. We represented the views of patients with TSC
in consumer consultations on Medicare Benefits
Schedule review
Photo: Dr Anne Halbert with our WA
Regional Contact, Sue Williamson
Tuberous Sclerosis
Australia
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2.
Publish and promote
TSC information
Your 2 day conference was more informative than
living every day with TSC. Doctors only ever told us
the need to know when we needed to know it. We
have a greater understanding about Kidney AML’s
and LAM. Dr Lisa and Dr Elizabeth were AMAZING
Thank you for having them there.
- Family stream attendee
1. The 2015 Australian TSC Conference’s family
stream was attended by 91 delegates. Over 20
sessions covered various aspects of life with TSC and
provided opportunities for people with TSC and their
family members to ask questions from Australian and
overseas experts.
100% of our family stream attendees said
the meeting improved their understanding
of TSC
they will share something you have learnt
with someone who was not at the meeting
would recommend the conference to others
2. Over seven hours of video recorded sessions
from the conference have been added to our TSC
information resources. The most watched videos by
the TSC community so far are: understanding the
genetics of TSC; the less common signs of TSC;
and future directions in TSC research.
5. A new surveillance guidelines summary makes
these clinical guidelines easier to understand and has
received great reviews by TSC families and health
professionals. We have also distributed hundreds of
TAND checklists to improve screening for various
mental health, learning and behaviour challenges
that people with TSC may experience.
6. We published two issues of our magazine,
Reach Out. These included stories from people
with TSC and their families, research news and
information about upcoming events. Feature articles
provided new information resources on the National
Disability Insurance Scheme and new medicines for
TSC (mTOR inhibitors).
7. We continued to share balanced and accurate
TSC information through social media and our
monthly email newsletter.
Our next goals
Deliver online education events for the first time,
improving access for people in regional areas to high
quality TSC information.
Continue to improve our online and printed TSC
information, responding to the needs of the TSC
community.
3. Our information day in Brisbane with Lady
Cilento Children’s Hospital and Epilepsy QLD was
attended by 40 people and included sessions
on epilepsy, development, genetics and kidneys.
4. Our TSC awareness cards provide people
with TSC a simpler way to explain TSC.
Photo: Bridget from ACT.
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3.
Encourage Research
into TSC
1. The clinical trial investigating a life-changing
treatment for facial angiofibromas, topical mTOR
inhibitors, was completed. This trial was funded for
over $200,000 by TSA. Publication of these results
improve access to this treatment in Australia and
around the world.
2. Sydney University’s study into the financial
impact of TSC opened recruitment. This study
specifically examines the out of pocket costs
experienced by families with a child with TSC and is
funded by TSA.
3. The Romios family in Victoria lead a campaign to
fund the DOTS study at Royal Children’s Hospital in
Melbourne, exploring links between TSC and Autism
and identifying targeted interventions to improve
developmental outcomes.
4. We promoted and explained TSC research in
our communications. Our Australian community of
TSC researchers continues to grow. By sharing their
research, and key publications from overseas, in plain
English, we help with recruitment to these projects
and understanding of TSC research in the TSC
community.
Our next goals
Continue to support our Australian TSC
researchers.
Develop a long term TSC research strategy for
Australia to guide our research funding and identify
other ways to grow local research.
Photo: Celebrating the completion of the topical mTOR
inhibitor clinical trial in Sydney.
4.
Provide direct support and
facilitate peer support
1. We helped more than 50 families through the
TSC Information Service, facing a diagnosis of TSC
or a time of crisis. The service provides emotional
support, practical advice, tailored TSC information
and connections to resources from TSA and other
organisations. This year we also implemented a new
technology solution, and formalised guidelines and
procedures to improve the availability and quality of
the service.
2. Our TSC Global Awareness Day picnics in eight
locations around Australia fostered face to face
contact among people in the same region. Thank
you to our wonderful volunteer regional contacts for
making these possible.
3. Held formal and informal peer support sessions
as part of the 2015 Conference and Brisbane events.
4. Facebook discussion group continues to be a
positive and informative resource for hundreds of
TSC families in Australia and New Zealand, with
369 posts in the year on topics including celebrating
accomplishments of people with TSC, seizures,
treatment options and accessing health services.
Our next goals
p: 1300 733 435
e: info@tsa.org.au
Continue the TSC Information Service, our
network of regional contacts and our peer support
Facebook group.
Work with young adults with TSC who are
interested in ongoing contact.
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5.
Ensure sustainable
funding
6.
Grow TSA as a reputable,
well-governed organisation
1. Our TSC Heroes team ran, cycled and hiked in
events around Australia and overseas to encourage
their friends and family to support our cause.
2. Lizzie’s Lunch held in Sydney raised over $15,000
through the generosity of the Pinkerton family and
friends.
3. Other events included the King and Kinman
families’ trivia night in Brisbane and Logan’s High Tea
in Victoria achieved fantastic results.
4. Our members and TSC Champions continue
their support through yearly and monthly donations.
5. Secured grants from Novartis and Department
of Social Services for our 2016/17 projects:
online educational events and building our TSC
Professionals Network.
1. Delivered on our people strategy through the
hire of our second staff member, the election of four
new committee members and engaging with new
volunteers in various capacities.
2. Our first governance and human resource
policies were written, approved and implemented.
3. We improved our planning and budgeting
processes to ensure we deliver on our goals.
Our next goals
Continue developing and implementing policies
to guide our work and our team.
Photos:
Top: TSC Hero Dr Jessica Smith from SA.
Bottom: Enjoying Lizzie’s Lunch 2016.
6. Welcomed our second staff member, Chelli Edri
into the role of fundraising, communication and
events manager.
Our next goals
Increase and diversify our income to allow us
to continue our information, support and research
activities and to deliver new projects and services.
Complete our 2016 survey to generate
fundraising leads and gather feedback on our
communications and fundraising.
Expand our business partnerships and grant
income.
Grow the TSC Heroes team to raise awareness of
TSC and expand our fundraising reach.
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Our financial results
Overview
TSA finished the year with a small surplus. This was
a good result considering the major expense of the
conference in November being largely funded from a
grant received in the prior financial year. The balance
sheet remains sound and we have healthy reserves.
Our retained earnings include funds that are
committed to these projects:
$15,000 for online educational events and growth
of the TSC Professionals Network
$2,000 for the in progress Sydney University APSU
Out of Pocket costs study
Our transition to cloud based accounting with our
bookkeeper has supported our distributed staff and
volunteer team. We also implemented the following
initiatives:
1. GST Registration: GST was successfully introduced
from July 1 2015 resulting in a net return of $3,327
in the full year in line with our forecast.
2. Superstream: We comply with the new regulations
concerning Superannuation Guarantee payments
3. Audit: Although not required by law, but
encouraged by state fundraising licensing
authorities, we have obtained a full audit.
4. Budgeting: Our budgeting process has been
improved and integrated with our accounting
platform for improved control and transparency.
Income and Expenditure
Where the funds come from
How funds were used
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 and Advocacy: Time
spent working with policy makers
in health and disability to improve
the care available to people with
TSC. No research grants were
awarded during 2015/16.
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.
Tuberous Sclerosis
Australia
8
Education and support: Costs
associated with providing
information to people affected by
TSC and to Health Professionals.
This includes all costs associated
with the 2015 Australian TSC
Conference, writing and updating
our TSC information pages, our
resource directory and publishing
Reach Out.

Our financial results
Overview (cont.)
Fundraising Revenue
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. This funding was received in
the 2014/15 financial year.
Novartis provided grant funding for activities
in 2016/17: online educational events and
growth of the TSC Professionals Network.
Revenue from fundraising activities including direct donations, membership
contributions, fundraising events and community fundraising activities
I think you do an amazing job. Without Tuberous
Sclerosis Australia I would have been very confused
and feeling helpless when things came to a head
this year. I have always thought of my daughter’s
condition like living with a time bomb, just ticking
away with no issues and when we least expect
it: boo! Never stop passing on this wonderful
information.
- Mother of a child with TSC
Clare Stuart travelled to the TSC International
(TSCi) meeting and International TSC
Research Conference in Windsor, UK. TSCi
travel funding is provided by Novartis.
TSA met with Pfizer to discuss their plans for
their mTOR inhibitor medicine for TSC and
LAM in Australia.
TSA met with GW Pharmaceuticals to discuss
their research into new treatments for
Epilepsy in TSC.
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.
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.
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Photo:
Attendees at the medical stream of the
2015 Australian TSC Conference
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Financial statements
Profit and Loss: Year Ended June 2016
INCOME
30 June 2016 30 June 2015
Bronze Membership Fee $113.75 $0.00
Silver Membership Fee $86.45 $0.00
Gold Membership Fee $205.18 $0.00
Contributions from members - Bronze $775.00 $1,190.00
Contributions from members - Silver $880.00 $1,100.00
Contributions from members - Gold $5,200.00 $10,308.55
Donations Received $50,034.10 $66,742.11
Educational Event Fees $11,030.00 $2,106.05
Fundraising Event Fees $11,820.00 $6,490.00
Grants Received $26,150.00 $48,120.10
Income From Raffles $2,411.00 $1,915.00
Interest Income $3,967.72 $5,226.03
Sales of Goods $709.50 $1,076.90
Sitting Fees $0.00 $1,225.60
Total Income $113,382.70 $145,500.34
Gross Profit $113,382.70 $145,500.34
LESS OPERATING EXPENSES
Accounting Fees $2,941.00 $2,673.00
Advertising and Promotion $3,002.38 $638.38
Bank Charges --$7.53 $759.07
Board/Governance Expenses $90.00 $234.94
Credit Card Fees $1,717.58 $1,984.35
Educational Event Expenses $26,006.35 $9,287.69
Fundraising Event Expenses $2,445.00 $4,879.07
Fundraising Expenses $2,367.05 $1,917.84
Information Technology Expenses $2,464.73 $5,643.75
Insurance Expense $2,576.16 $2,184.45
Membership Fees Paid $612.05 $150.00
Postage, Freight and Courier $843.90 $809.97
Printing & Stationery $3,308.92 $2,963.70
Publications and Information Resources $3,713.37 $7,114.25
Rapamycin Extension $0.00 $1,582.20
Research Grants Awarded $0.00 $29,783.17
Salaries and Wages $21,054.31 $16,461.53
Salaries and Wages - Fringe Benefits $15,743.40 $13,468.53
Salaries and Wages - Superannuation $3,423.92 $3,303.79
Sundry expenses $590.15 $626.65
Telephone, Fax and Internet $1,025.24 $440.36
Training & Development (Staff) $1,119.36 $0.00
Travel & Accommodation $18,130.87 $3,688.02
Volunteer Costs $82.00 $762.54
Total Operating Expenses $113,250.21 $111,357.25
Net Profit $132.49 $34,143.09
Tuberous Sclerosis
Australia
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Financial statements
Balance Sheet as at 30 June 2016
ASSETS
Bank
Term Dep-EPinkerton Mat19/5/15 $0.00 $5,110.09
Bank - At Call Cash Accounts
CBA Cash Investment Account $43,356.18 $79,998.23
General Cheque Account $24,104.91 $11,384.90
Macq Cash Management Acc $18,422.43 $19,071.85
Total Bank - At Call Cash Accounts $85,883.52 $110,454.98
Total Bank $85,883.52 $115,565.07
Current Assets
Accounts Receivables $15,000.00 $0.00
Reserved funds (Pinkerton) $10,207.45 $0.00
Total Current Assets $25,207.45 $0.00
Fixed Assets
Macquarie Term Deposit - Maturing 2nd August 2015 $0.00 $125,000.00
Macquarie Term Deposit - Maturing 2nd August 2016 $127,025.68 $0.00
Macquarie Term Deposit - Maturing 5/10/16 $55,649.67 $54,860.73
Total Fixed Assets $182,675.35 $179,860.73
Total Assets $293,766.32 $295,425.80
LIABILITIES
Current Liabilities
GST -$21.48 $0.00
PAYG Withholding Payable $0.00 $963.00
Rounding $0.25 -$0.01
Superannuation Payable $0.00 $831.24
Suspense -$438.24 $0.00
Trade Creditors $335.23 $0.00
Unpaid Expense Claims $126.50 $0.00
Total Current Liabilities $2.26 $1,794.23
Non-Current Liabilities
Sydney University Out of Pocket Expenses Study $2,745.00 $2,745.00
Total Non-Current Liabilities $2,745.00 $2,745.00
Total Liabilities $2,747.26 $4,539.23
Net Assets $291,019.06 $290,886.57
EQUITY
Current Year Earnings $132.49 $34,143.09
Retained Surplus $290,886.57 $256,743.48
Total Equity $291,019.06 $290,886.57
The accounts for 2015/16 were audited by Mark Mortimer (Registered Auditor No. 1942).
A copy of his report is available at https://tsa.org.au/annual-reports/
The accounts of TSA align to the National Standard Chart of Accounts
published by the Australian Charities and Not-for-profits Commission.
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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
18 Central Rd, Beverly Hills
NSW 2209 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.
Thank you for helping make
this a reality.
Tuberous Sclerosis
Australia