Reach Out October 2019

Reach
Out
OCTOBER 2019 ISSUE 110
TSC Connect
p8
Our new
nurse p6
Research
updates
p17-20
www.tsa.org.au

TSA News
Contents
Editorial................................................................................................. 3
President’s Report................................................................................. 4
Six Months In ....................................................................................... 5
Communities Connecting for TSC Global
Awareness Day 2019............................................................................14
Connecting with Other Organisations.............................................16
Connecting Through Technology ..................................................... 6
Welcome Kim........................................................................................ 7
TSC Connect, Brisbane........................................................................ 8
The Value of Connections................................................................... 9
Our Financial Results..........................................................................10
EPISTOP: International Research Results on Epilepsy...................17
Research News.....................................................................................18
Australian Families’ Experience with a TSC Diagnosis................. 20
Congratulations to Dr Fiona McKenzie............................................21
The Impact of your Support.............................................................. 13
Snapshot............................................................................................... 22
Our cover image is of participants at the TSC Connect event in Brisbane in May 2019.
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, but
with appropriate support most people with TSC can live fulfilling lives.
Tuberous Sclerosis Australia
Works to connect, inform and empower people affected by tuberous
sclerosis complex as we work towards a cure for TSC.
TSA was established in 1981 as a volunteer organisation to connect families
living with TSC. We have hundreds of members including people with TSC and
their families along with health, education and caring professionals.
Our priorities
1. Ensure Australians with TSC have access to the best possible healthcare
2. Provide up to date and accurate information to all Australians with TSC
3. Support individuals and families affected by so no one has to face the
challenges of TSC alone
4. Promote access in Australia to the gobal research program that is working
towards a cure for TSC
President Debbie Crosby
Vice President Michelle Purkiss
Committee Member
Treasurer Patrick Norris
Secretary Alison McIvor
Michael Jones
Public Officer Debbie Crosby
Medical Advisory Board Dr David Mowat,
Clinical Geneticist
General Manager
Fundraising and
Communications
Dr John Lawson,
Paediatric Neurologist
Dr Sean Kennedy
Paediatric Nephrologist
Jackie Gambrell
Kate Garrard
The TSC Information Service
Visit our website for extensive information about TSC for individuals, their families
and professionals www.tsa.org.au
Call or email us to speak to one of our volunteers. We have regional contacts throughout
Australia who can meet face to face and connect you with local services. 1300 733 435
TSA Nurse
This is a free, confidential information and support service for those in Australia. You can speak
with our Nurse about any TSC-related questions or concerns you have. Email nurse@tsa.org.au
Not in Australia or New Zealand?
TSA is a founding member of Tuberous Sclerosis Complex International, a
worldwide association of TSC organisations. The TSCi website contains
a directory of TSC organisations around the world
www.tscinternational.org
2
Reach
Out
OCTOBER 2019 ISSUE 110

TSA News
Editorial
Teresa Llewellyn-Evans
Welcome to the October 2019 issue
of Reach Out. This issue highlights
the importance of connections. My
son David had Hunter syndrome or
Mucopolysaccharidosis type 2 (MPS II)
and some of my closest friendships have
come from a shared experience of MPS and
with those who supported us on our journey.
You too might make lasting connections with
like-minded people by engaging with the
TSC community.
Tuberous Sclerosis Australia (TSA) was established in 1981 as
a volunteer organisation to connect families living with tuberous
sclerosis complex (TSC). And today TSA still works to connect,
inform and empower people affected by TSC as we work towards
a cure for TSC.
A diagnosis of tuberous sclerosis can be very isolating.
Connecting with others can provide support and help break
down this feeling of isolation. Debbie Crosby describes it in the
following way in her president’s report on page 4: “…connections
with others…are so vitally important when facing the challenges
of life with TSC…it often helps me remember that my family is
not the only one going through these challenges.”
Connecting is important at all stages of life. Read about our
first ever TSC Connect event for adults living with TSC held in
Brisbane in May and Penny McKee’s reflection on this event on
pages 8-9.
Members of our TSC community can also connect through
our closed Facebook group, which is only open to those affected
by TSC. Find out more on page 9.
TSA’s new nurse service will make
connecting to the support and information
you need even easier. Kim will be able to
support you with information, links to
practical support and help you to live well
with TSC. Read more about the service and
Kim on pages 6-7.
Our Celebrations section highlights the
many ways our TSC community connected for
TSC Global Awareness Day on 15 May this year. Read
more about pyjama days in Tasmania, morning teas in
Victoria, dinners in Perth and online Facebook campaigns, as well
as many people taking selfies wearing their wave tattoos on pages
14-15.
Our fundraising snapshot highlights some of the wonderful
ways our TSC community connects to raise much needed funds for
TSA including entertainment evenings, lunches, appeals, grants,
memberships, TSC Hero events and more (see pages 22-23).
Connecting with other rare disease and patient organisations
to share expertise and knowledge is also important. Jackie, our
new General Manager, describes two recent events where TSA
connected with 100 charities across Australia at the inaugural
Australian Patient Organisation Network (APON) Conference in
Sydney, and with 25 international TSC patient associations at the
TSC International Research Conference in Toronto. Read more
about this on page 16.
And, of course, we will continue to connect you to the latest
local and international TSC research. You will find this on pages
17-20.
Enjoy!
Reach Out Official Journal of Tuberous Sclerosis
Australia, Inc.
18 Central Rd, Beverly Hills NSW 2209
Telephone: 1300 733 435
Website: www.tsa.org.au
Email: info@tsa.org.au
ABN 20 681 174 734
Incorporation no. Y 07116-42
Registered Charity CC25313
Reach Out Editor: Teresa Llewellyn-Evans
Disclaimer
The opinions expressed in this journal are those of the
authors and are not official pronouncements of TSA Inc.
Permission
Permission must be sought from the authors or publishers
to reproduce in any way articles or information contained
in this journal. Once permission is received the source must
be acknowledged.
3

TSA News
President’s Report
Debbie Crosby, President
Welcome to our October 2019 issue
of Reach Out. Connections is
the theme for this issue and so it is very
fitting that our first ever TSC Connect
event for adults living with TSC was held
in Brisbane in May. It was wonderful to
meet everyone and share personal stories
and information. I thank you for your
passion and commitment and I’m sure
some strong and lasting connections were
made among the group. Thanks also to
Nikky Isbel, Consultant Nephrologist at
Princess Alexandra Hospital, and Megan
Higgins, Clinical Geneticist with Genetic
Health Queensland, who generously gave
up their weekend to present to the group.
As a community we are fortunate to have
such committed health professionals
working alongside us.
I would also like to thank our new
General Manager, Jackie Gambrell, who
hit the ground running and organised
this fantastic event. Jackie has been very
busy since joining TSA and, as all of you
know, TSC is such a complex disease to
understand and there is so much to learn.
It has been an exciting time to have her
join the organisation, as we improve and
grow our services.
In June this year we held our biggest
Lizzie’s Lunch event, with over 120
people connecting for our cause. It was a
fabulous day with Master of Ceremonies
Ron Wilson, and we raised more than
$22,000 for TSA. Once again, we are
indebted to Sue Pinkerton and her
amazing family and friends for making
this event happen. Sue, you just keep
rising to the challenge to make it bigger
and better every year!
I’m really looking forward to our
next major fundraiser, Comedy for a
Cure, in Sydney. We have a top class line
up of comedians so, if you haven’t yet
got your tickets then you’d better hurry.
It’s sure to be a fabulously funny night.
Again, thanks to the team who have been
working tirelessly to make this happen,
in particular, Rob McHugh, Kate Garrard
and Michelle Purkiss.
Connections with
others – be it family,
friends or members of our
community - are so vitally
important when facing
the challenges of life with
TSC…It often helps me
remember that my family
is not the only one going
through these challenges.
It is with sadness, but understanding,
that we’ve seen two of our TSA committee
members stand down in the last six
months to focus on other personal
priorities. Kate Veach and Georgie Schilg,
both mothers of children with TSC,
contributed an enormous amount during
their time on the committee and we thank
them both. Ensuring the committee is
represented by people living with TSC
or have a TSC connection is important
and assists us to ensure TSA continues to
support the TSC community successfully.
As we all know, connections with
others – be it family, friends or members
of our community - are so vitally
important when facing the challenges
of life with TSC. Personally, as a mother
of a child with TSC, I find speaking to
or hearing from others who have gone
through the same or similar experiences
very helpful. Importantly, it often helps
me remember that my family is not the
only one going through these challenges.
TSA is committed to connecting
with all those whose lives are affected by
TSC. In 2020 we are planning another
connect event for families and adults from
around Australia who are living with TSC
as well as members of our TSC health
professionals community. We’re also
thankful for the financial support from
Lotterywest for a planned TSC event in
Perth next year.
We look forward to continuing to
connect with you to share your stories
and information. I’d like to thank
the continuing members of the TSA
committee – Michael Jones, Alison
McIvor, Patrick Norris and Michelle
Purkiss – who volunteer their time and
always do such great work. Let’s keep
connecting!
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OCTOBER 2019 ISSUE 110

TSA News
Six Months In
Jackie Gambrell, General Manager
My first six months as TSA’s new General Manager have
been very rewarding and wonderfully diverse. I’d like to
thank everyone for the very warm welcome they’ve given me.
It’s been a busy time with visits to Sydney Children’s Hospital,
speaking at Baker McKenzie on Global Awareness Day, a trip to
an international conference and forming connections with other
rare disease, patient and genetics associations.
The undoubted highlights though were attending Lizzie’s
Lunch and meeting so many of you, our wonderful community,
and spending time with attendees at our TSC Connect event in
Brisbane. I’m really looking forward to running and attending
more events like these. I hope to see many of you at Sydney’s
Comedy for a Cure on Saturday 26 October.
Six months in, I find myself starting to ask lots of questions,
such as:
• What other information and support does our community
need and want?
• How do we ensure everyone in Australia living with TSC
knows about us and has access to our information and
support?
• Can we promote the benefits of the TSC clinic approach with
the hope of establishing one in every state and territory?
• How can we ensure the best possible network of health
professionals with TSC expertise throughout Australia?
• What can we do to support health professionals here
and internationally investigate and research the full potential
of mTOR inhibitors and other treatments that might lead to a
cure for TSC?
One thing’s for sure. TSA and I need your help. TSA exists for
you and we need to know what you think and want. This is why
we are asking you to complete our 2019 survey. We will of course
share the outcomes of the survey with you. Together, I’m confident
we can both ask and answer the big questions. Please complete the
survey today! Thank you for your help.
Help Us to Help You
TSA is launching an online survey to find out more about you, our
TSC community. Your feedback will help us focus our efforts and
further improve our services, communications and fundraising.
Your responses will be kept private and confidential, as already happens with all the personal
information you share with TSA. The survey is available at: https://www.tsa.org.au/survey
What are we asking you and why?
One of our goals for 2020 is to expand our TSC Health Professionals Network. So, in this year’s
survey we ask you to tell us about your GP and your health professional team.
We also want your views and input on current and future services – newsletters, online forums,
events, education resources and the TSA website – to find out how well we are connecting you to
the support and information you need.
Please Help Us to Help You. Go online and complete the TSA survey today.
www.tsa.org.au/survey
5

TSA News
Connecting Through
Technology
TSA’s new nurse service
Everyone at TSA is excited to welcome our new nurse, Kim Kerin-Ayres. The addition of a
qualified nurse to our team is a significant one. TSA’s new nurse service is a free, confidential
information and support service to support you with information, links to practical support
and to help you live well with TSC. Kim is committed to helping the TSC community and will
work hard to find answers to your many and varied questions. She will be working closely with
and supported by members of our TSC health professionals network around the country and
our regional volunteers who know what it is like to live with TSC.
Kim can help you with any questions and/or concerns you may have about TSC, including:
• emotional support if you or someone you care about has TSC
• questions you may have about TSC, including about tests and medical procedures
• pathways for navigating the health system
• how to find other organisations and resources that can help you in your life with TSC.
Kim will also be able to help adults with TSC develop a personal care plan based on the TSC
surveillance guidelines.
Kim is available by appointment on Wednesdays and Fridays each week. You can book an
appointment by emailing nurse@tsa.org.au
TSA is grateful to the Centre for Community-Driven Research (CCDR) for making it possible
for us to have our very own nurse. Kim has been appointed as part of the Patient Pathways Pilot
Program developed by CCDR. The aim of the pilot project is to increase the capacity of patient
organisations, like TSA, to support patients to navigate the health system and access all that is
available to them, including clinical trials.
Patient Pathways is being funded by the Australian Department of Health.
Do you know and
implement the TSC clinical guidelines?
Check them out online at:
https://tsa.org.au/information/guidelines-tsc/
Have you recently completed a
TAND assessment with your clinician?
Find the checklist online at:
https://tsa.org.au/wp-content/uploads/2015/02/TAND_checklist-2014.pdf
To book an
appointment with
Kim email
nurse@tsa.org.au
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OCTOBER 2019 ISSUE 110

TSA News
Welcome Kim
We are delighted
to welcome Kim
Kerin-Ayres who is TSA’s
new part-time nurse.
Kim is a Clinical
Nurse Consultant and
has worked in a variety of
roles within the healthcare
system for 30 years. Her
work experience includes both
health settings and not-for-profit
environments. Kim has unique
experience working with a telephonebased
helpline where she was
responsible for responding
to inquiries from patients,
health professionals and the
general public for clinical and
supportive care information.
According to Kim, one of
the advantages of telehealth is
its accessibility to everyone. “It
doesn’t matter where you live, or how
far you are from a major city or hospital.
Telehealth means anyone who has a phone connection can get
help and support.”
As Kim says: “Health systems are complex and people
experience evolving informational and supportive care needs
along the way.”
For Kim, a critical aspect of her role is ‘sign-posting’ and
directing people to the resources and support they need, whilst
empowering them to take an active role in managing their
complex condition. “I have broad experience of supporting people
and managing the impact and implications a condition has for
individuals as well as family and friends. I also have extensive
experience developing educational resources for health professionals
and developing and delivering workshops and conferences.”
Kim, a mother of two boys, is currently spending time with
other TSC-related health professionals, such as the team at
Sydney Children’s Hospital and Epilepsy Action Australia and is
grateful for their time and support. She has also connected with
the nurse network at TS Alliance in the US so that TSA can learn
from their experiences.
“I’m really excited to be working with the TSC community and
look forward to speaking with many of you in the coming months.”
Reach out to Kim if you have a question or concern. You can
book an appointment by emailing nurse@tsa.org.au
It doesn’t matter where you live, or how far you are
from a major city or hospital. Telehealth means anyone who
has a phone connection can get help and support.
7

TSA News
TSC Connect,
Brisbane
First Connect Event for Adults
TSA held its first TSC Connect event for adults in
Brisbane on 25 May this year. The purpose was to
connect adults living with TSC, provide them with
up-to-date health information and give them an
opportunity to share their experiences.
The day kicked off with two excellent presentations.
Firstly, the group discussed kidney health with Nikky Isbel,
Consultant Nephrologist at Princess Alexandra Hospital and
Associate Professor Medicine at The University of Queensland.
Nikky answered every question posed to her and one participant
was fortunate to connect with their new specialist!
Megan Higgins, Clinical Geneticist with Genetic Health
Queensland, then talked about the genetic issues associated with
TSC and the genetic testing options available.
Nikky Isbel
their experiences of living with TSC or supporting someone with
TSC. Participants shared diagnosis stories, symptoms, experiences
of the health system and the benefit of having a GP who takes
a holistic view and considers what might or might not be TSCrelated.
The groups found many similarities in their stories.
Everyone agreed that it was good to get together as a group of
Participants
shared diagnosis
stories, symptoms,
experiences of the
health system and the
benefit of having a GP
who takes a holistic
view...!
Discussion group
All participants agreed that these sessions were very
worthwhile and had improved their understanding of TSC.
We thank Nikki and Megan for making their expertise
available to us and giving up their valuable weekend time.
We are fortunate indeed to have such
health professionals working
with our community.
In the afternoon
smaller groups shared
Even
though I am
in my forties,
I’d never met
anyone with TSC before.!
Gwen
adults living with TSC and some strong, and hopefully lasting,
connections were made.
Participants also suggested the need for more information on
managing an emergency away from home, managing the mental
health impacts of TSC, and negotiating the NDIS. Participants
said they would love TSA to run more of these
TSC Connect events on a regular basis across Australia.
The day concluded with a guided mindfulness session and
a slow and mindful walk around the beautiful courtyard at the
Translational Research Institute where the event was held.
It was a perfect end to a positive and productive day.
TSA would like to acknowledge the support of the Department of
Social Services in providing financial assistance to help participants
to attend this event.
8 Reach
OCTOBER 2019 ISSUE 110
Out

TSA News
The Value of Connections
Penny McKee, NSW
Penny McKee from regional NSW was one of the participants
at the Brisbane Connect event for adults living with TSC.
In this Q&A, Penny explains why she attended and her experience
of the weekend.
The value of attending was to
‘connect’ in its truest sense -
connect with others and connect
with the latest information - and
hear TSC stories…These connections
are vital for people living with rare
and progressive conditions.
What made you sign up for the event?
Signing up to attend the TSC Connect Weekend in Brisbane was a no
brainer. Having attended the Melbourne TSC Family Day two years ago,
the value of attending was to ‘connect’ in its truest sense - connect with
others and connect with the latest information - and hear TSC stories.
It costs a lot to travel from regional NSW to Brisbane for a weekend
away. The assistance offered to me by TSA, through the NDCI grant
funding, removed this financial barrier.
And lastly, it was time to find out more about TSC. TSC issues have
always been lurking but the leading role for the last ten years has been
played by lymphangioleimyomatosis (LAM) which is a lung condition
associated with TSC. Recent recurring migraines and genetic issues of
the past had resurfaced, and it was time to find out more.
Did the event meet your expectations?
Yes. The information was relevant and real. It was presented like a
seminar which meant there was plenty of time for questions and
answers.
What did you learn?
I learnt about genetic testing which is territory my family and I will
be exploring with our two children. They are symptom free of TSC so
far and have not yet been tested. However, if they do have TSC, they
could develop LAM later in life and I’m keen to ensure they have early
medical surveillance for this.
Did the event help you connect with others living with
TSC?
Most definitely! This weekend was about adults living with TSC and,
among others, I met another TSC lady who had just been diagnosed
with LAM. These connections are vital for people living with rare and
progressive conditions.
Thank you TSA. I was most grateful to be able to attend the TSC
Connect weekend.
Connect with others on our closed Facebook group
TSA has a closed group on Facebook which is only open to those affected by TSC.
It is a wonderful forum for sharing your experiences of living with TSC and finding out about
other people’s experiences. It’s a place where you can ask questions or just read about the
experiences of others. It’s a great source of knowledge.
Recent discussions have included:
• How to get travel insurance
• Side effects of treatments
• National disability insurance
scheme
• Triggers for seizures
• Lymphangioleimyomatosis (a lung
condition associated with TSC)
• How to explain TSC to children.
If you’d like to join, please go to Facebook and search for the group: “Discussions of Tuberous Sclerosis in Australia and New Zealand”.
9

TSA News
Our Financial
Results
Patrick Norris, TSA Treasurer and grandfather of Liam
Patrick Norris
In response to feedback from our members about good
environmental practice, we are no longer automatically
sending all our members a paper copy of TSA’s Annual
Report. We wish, however, to make sure that everything we
do is still transparent and that we are accountable to you, our
community. We are therefore including our headline financials
for the 2018/2019 Financial Year in this issue of Reach Out. If
you would like to see the full Annual Report, it is available
online at www.tsa.org.au/annual-reports/ or, if you would
like to receive a paper copy, simply send an email request to
info@tsa.org.au
This has been a year of change for TSA with the departure
of our inaugural General Manager. To facilitate a smooth
handover, this change in management entailed investment in a
period of transition for the team and so we finished the year
with a small deficit of $12,159.
It has also been a year where our growth strategy and our
deliberate decision to invest in fundraising and development
activities has reaped rewards and we saw a significant uplift in
income. We have also moved from an organisation that was
predominately volunteer run to now boasting a team of three
dedicated, part-time paid employees, including, thanks to grant
funding, our new nurse. We have had a dramatic increase in
securing grant monies. Because these grants are typically tied to
specific expenditure, we do not recognise these funds as income
until expended.
Our bookkeeping partners, Refuge Accounting, continue to
ensure that we are compliant in payroll, superannuation and GST.
We use the Xero cloud-based accounting package which provides
secure multi-user access for employees, bookkeepers, committee
members and auditors. All invoices, receipts and documentation
are stored inside Xero, facilitating transparency and auditability.
We also use the CommBiz business banking platform which
requires double authorisation for all payments. Any two of the
President, the Secretary and myself are permitted to authorise.
Our investment policy remains conservative. We invest solely
in term deposits currently across Macquarie Bank and Bank of
Queensland. The maturity dates of our deposits are staggered
through the year so that we always have funds coming available to
aid cashflow. At all times, we aim to keep enough cash available to
meet payroll requirements for the next three months.
The accounts for 2018/19 were audited by Mark Mortimer
(Registered Auditor No. 1942) of Bondy Mortimer & Co. A copy of
his report is available at https://tsa.org.au/about-us/annual-reports/
Building upon our strong
foundations will help us
ensure we will be around
for the long-term ... so every
family and person living with
this disease can benefit from
the expert help and advice
TSA provides.
The accounts of TSA align to the National Standard
Chart of Accounts published by the Australian Charities and
Not-for-profits Commission.
As a grandfather of a young boy with TSC, I want to see this
organisation succeed and be sustainable for the future so every
family and person living with this disease can benefit from the
expert help and advice TSA provides. Building upon our strong
foundations will help us ensure we will be around for the longterm.
TSA is committed to continue to work with the TSC
community to secure the funding we need to achieve our goals and
a sustainable future.
Our work with pharmaceutical companies
TSA has previously collaborated with Novartis and other
pharmaceutical companies in a number of ways. This
year we did not receive any project funding or support
from the medicines industry. Our policy on working
with pharmaceutical companies, which is available on our
website (www.tsa.org.au), describes how we maintain our
independence and integrity.
10
Reach
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OCTOBER 2019 ISSUE 110

TSA News
Financial Statements
Balance Sheet as at 30 June 2019
ASSETS 30 June 2019 30 June 2018
Bank
General Cheque Account $88,728.34 $32,849.72
PayPal $2,768.68 $0.00
Savings Accounts $30,820.45 $10,117.88
Term Deposits $188,359.02 $203,207.42
Total Bank $310,676.49 $246,175.02
Current Assets
Accounts Receivables $317.50 $0.00
Sundry Debtors $2,029.35 $2,916.01
Total Current Assets $2,346.85 $2,916.01
Total Assets $313,023.34 $249,091.03
LIABILITIES
Current Liabilities
Accrued Expenses $8,000.00 $0.00
GST $210.64 -$769.71
PAYG Withholding Payable $1,648.00 $2,037.00
Provision for Annual Leave $6,619.67 $6,511.82
Provision for Long Service Leave $3,617.07 $0.00
Salary Sacrifice Payable $0.00 $0.09
Superannuation Payable $3,130.53 $2,367.04
Suspense $0.00 -$350.00
Trade Creditors $0.00 $56.27
Unexpended Grants $64,049.47 $0.00
Unpaid Expense Claims $693.93 $2,016.37
Total Current Liabilities $87,960.31 $11,868.88
Total Liabilities $87,960.31 $11,868.88
Net Assets $225,063.03 $237,222.15
EQUITY
Current Year Earnings -$12,159.12 -$55,653.92
Retained Surplus $237,222.15 $292,876.07
Total Equity $225,063.03 $237,222.15
11

TSA News
Financial Statements
Income and Expenditure: Year Ended 30 June 2019
30 June 2019 30 June 2018
INCOME
Donations Received $114,012.83 $64,397.35
Grants Received $21,501.47 $13,785.24
Event Income $35,114.70 $24,060.00
Membership Contributions and Fees $12,272.75 $11,911.12
Other Income $4,967.51 $5,283.39
Sales of Goods $3,403.53 $3,760.01
Total Trading Income $191,272.79 $123,197.11
Gross Profit $191,272.79 $123,197.11
OPERATING EXPENSES
Accounting and Bank Fees $7,806.89 $8,245.32
Advertising and Promotion $213.47 $97.27
Consultancy Fees $2,100.00 $8,200.00
Educational Event Expenses $5,208.80 $4,669.13
Foreign Currency Gains and Losses $0.00 $325.62
Fundraising and Event Expenses $16,143.76 $15,163.20
Information Technology Expenses $8,352.70 $9,970.71
Insurance Expense $2,839.19 $1,864.08
Postage, Freight and Courier $3,197.25 $2,636.78
Printing & Stationery $2,784.60 $5,932.75
Publications and Information Resources $13,920.45 $3,883.57
Research Grants Awarded $0.00 $2,495.45
Salaries and Wages $125,240.33 $101,914.08
Sundry Expenses $1,611.89 $2,997.36
Telephone, Fax and Internet $1,029.87 $1,734.00
Training & Development (Staff) $681.55 $314.81
Travel & Accommodation $12,301.16 $8,406.90
Total Operating Expenses $203,431.91 $178,851.03
Deficit/Surplus -$12,159.12 -$55,653.92
If you would like to
see TSA’s Annual Report
it is available
online at www.tsa.org.au/
annual-reports or, if you
would like to receive a
paper copy, simply send an
email request to
info@tsa.org.au
12 Reach
OCTOBER 2019 ISSUE 110
Out

TSA News
The Impact of Your Support This Year
94
TSC families helped through
our TSC Information Service
32,618
People visited our website
for information about TSC
67
TSC Information pages
viewed each day
1
New TSC medicine
included on the PBS
520
Members supported through our
online discussion group
25
Families took part in a research project sharing
their new diagnosis experience
1,384
Comments posted in
our online discussion
group
65
Australian TSC families
have received their
free children’s book about TSC
15
Adults participated
in TSC Connect
84
Families attended TAND education events
across the country
1
Elizabeth Pinkerton Memorial
2
Award presented
Issues of Reach
Out published
13

Events
Communities Connecting
for TSC Global
Awareness Day 2019
Celebrations
On 15 May, Global Awareness Day inspired our TSC community
to raise awareness and over $12,000 for people living with TSC.
There were celebrations all around the country to mark this
special day for our rare disease.
Thank you for encouraging your communities to come
together in support of your loved ones who live with TSC. There
were pyjama days in Tasmania, morning teas in Victoria, dinners
in Perth, online Facebook campaigns as well as many people
taking selfies wearing their wave tattoos. What a wonderful
achievement!
Rob, Mimi and Roxie
Blackmans Bay
School PJ Day
In celebration of Roxie
Rob and Mimi’s daughter Roxie has TSC. For Global Awareness
Day, Rob purchased some #Tatts4TSC tattoos via our website
and posted a photo of his family wearing their wave tattoos on
Facebook. By adding a donate button to their post, and sharing a
little bit about their TSC journey, they inspired just over $4,000 in
donations in support of our work.
Heroes4Caleb in the Radio Hobart studio
#Heroes4Caleb
Caleb from Tasmania lives with TSC. His
big sister Jemima decided to inspire her
school, Blackmans Bay Primary School,
to hold a pyjama day for TSC Global
Awareness Day. They collected a gold
coin from each student who wore their
pyjamas to school. In return, students
received a wave tattoo. They raised over
$400.
The ABC local radio station heard
about Jemima’s plans and invited the
whole family into the studio for an
interview to help raise awareness for TSC
and promote Jemima’s terrific efforts.
You can listen to the interview on TSA’s
YouTube channel.
Caleb’s grandma Ros also got
involved. She held a morning tea with 30 of her friends from the
Davenport Uniting Church Fellowship Group and raised $550.
14
Reach
Out
OCTOBER 2019 ISSUE 110

Events
Rachel’s birthday
Rachel from NSW’s Riverina region was celebrating her birthday
around 15 May. Because her daughter lives with TSC, Rachel
decided to combine her birthday with some fundraising for TSA.
Rachel raised $800 and her birthday was all the more colourful
with everyone wearing their temporary tattoos.
Baker McKenzie
Our new partner, Baker McKenzie, invited us into their firm for a
morning tea to launch our partnership and celebrate TSC Global
Awareness Day. The Baker McKenzie team presented us with a
cheque for $1,600 and raised another $127 on the day. What a
fantastic connection!
Gayle and the
Lions Club of
Nyah
Gayle’s family has been dealing
Gayle’s wave cake
with the challenges of TSC for a
long time, as her adult daughter
Amy lives with TSC. Gayle contacted her local Lions Club of Nyah in
Victoria. By sharing a little about their life with TSC, Gayle secured a
$1,500 donation.
But Gayle didn’t stop there. She also held a morning tea with
friends and with the nurses at her work. To top it off she baked a
special wave cake to share the message that living with TSC is like
riding waves. There are highs and lows and unpredictable tides that
threaten to tow you under. Even though we often can’t control the
TSC waves, we can learn to surf.
At Baker McKenzie’s on TSC Global Awareness Day
Sydney Children’s Hospital, Randwick
The TSA team kicked off its TSC Global Awareness Day events at
the TSC Clinic at Sydney Children’s Hospital in Randwick, NSW.
We had a great time meeting the families who were there and
sharing our #Tatts4TSC with all the children, families and doctors.
In celebration of Sophie
Gayle and friends
A family in the Tasmanian suburb of Trevallyn got involved in
TSC Global Awareness Day. Georgie held a morning tea at work to
raise awareness of her eldest daughter Sophie who lives with TSC.
CBA Commodities Team
Todd, who works in institutional banking at CBA, was introduced
to TSA through The Growth Project, which brings together charity
and business leaders. Todd was paired with Clare Stuart, who was
then General Manager of TSA. Todd inspired his work team to
donate. They raised over $1,300.
Galada Kindy
Tracey organised an awareness morning tea at Galada Kindy in
Epping in Victoria. She baked lots of goodies and shared them with
her early childhood educator colleagues.
Thank you also to everyone who purchased
tattoos and wore them on 15 May. We sold
140 which helped us raise over $400.
Thank you to everyone who made this year’s
Global Awareness Day such a huge success.
15

Events
Connecting with Other
Organisations
As a small not-for-profit organisation, the team at TSA knows
how important it is to collaborate and connect with other
rare disease and patient organisations. This ensures we make the
best use of resources, stay aware of things happening in, and to,
the sector, and join forces to advocate on particular issues.
TSA does this on both an international and a local level.
We have particularly strong ties with Tuberous Sclerosis
Complex New Zealand, our sister patient organisation across
the Tasman.
TSA is fortunate to be included in several forums where
members freely and gladly share their expertise and knowledge.
In this issue of Reach Out we give you a glimpse of a couple
of the events that helped us connect with other like-minded
organisations.
TSA connected with 100 other local charities
In May this year, Clare Stuart and Jackie Gambrell (the former
and current TSA General Managers respectively), attended the
inaugural Australian Patient Organisation Network Conference
(APON) in Sydney. Over 100 charities participated in this
event. This is a starting point in bringing patient organisations
together and developing networks. The idea is that a cohesive
and collaborative non-profit sector can be leveraged to
address common goals. Participating organisations, including
TSA, identified the following challenges in supporting their
communities:
• Creating sustainable organisations
• Equity of access for all
• Health literacy
• Health system navigation
• Stigma and visibility.
APON charities agreed to work together to come up with
potential solutions to these challenges and to advocate for
change. We’ll keep you posted on our progress.
TSA connected with international TSC patient
associations
In June this year, Jackie Gambrell, TSA’s General Manager, and
Dr David Mowat, one of TSA’s Medial Advisors, made their
way to Toronto for the TSC International (TSCi) Research
Conference. 250 people from 28 countries attended. It was
fantastic to see the depth and breadth of research being
conducted across the globe by many brilliant minds. It shows
just how much research into TSC is taking place!
At a workshop representing 25 patient organisations from
around the world, we shared ideas about some of the challenges we
each face, including:
• finding and connecting with all those who have TSC
• engaging with clinicians and researchers and raising their
interest in TSC
• getting the clinical guidelines known and implemented
• working towards early diagnosis and treatment
• achieving optimal assessment of TAND (TSC-associated
neuropsychiatric disorders).
For more details on the research conference visit: http://online.
fliphtml5.com/tosk/ghir/ or listen to the podcast at: https://tscnow.blubrry.net/2019/07/16/episode-3-the-2019-international-tscresearch-conference/#more-39
TSA extends a sincere thanks to TSC International for providing
funding so TSA could attend this important TSC event.
Many advances have been made in tuberous sclerosis complex (TSC) in
the last thirty years. In addition to identifying the molecular basis for TSC, it
has become clear that affected individuals benefit greatly from early diagnosis,
understanding of the true nature of the disorder, and thoughtful, progressive
medical, surgical and psycho-social management. There is understandable
excitement about increased understanding of the causes of TSC, as well as the
new and targeted treatments available for it.
David Neal Franz, Keynote Speaker at the TSCi Research Conference 2019
Founding Director, TS Clinic, Children’s Hospital Medical Centre, Cincinnati
16
Reach
Out
OCTOBER 2019 ISSUE 110

Research
EPISTOP:
International
Research Results on
Epilepsy
Dr Kate Riney
One of the most exciting presentations at this year’s TSC
International Research Conference was delivered by
Professor Sergiusz Jozwiak, Paediatric Neurologist and Head of
Department of Neurology at the Children’s Memorial Health
Institute in Warsaw, Poland.
Professor Jozwiak is Project Coordinator of the EPISTOP
Project, one of the largest international scientific research
programs on epilepsy. He delivered a session called, “Lessons
learnt from the EPISTOP study.”
EPISTOP was a multi-centre project aimed at improving
epilepsy management in individuals with TSC. It involved 101
infants under the age of four months diagnosed with TSC. The
study had two goals:
• to compare the results of standard and preventative
treatment of epilepsy in infants with TSC
• to identify biomarkers that can predict the development of
epilepsy in a child with TSC.
In the randomised trial, standard treatment with vigabatrin
started after the onset of clinical or sub-clinical seizures, was
compared to preventive treatment started because of epileptiform
abnormalities on EEGs but before the onset of seizures.
According to Professor Jozwiak, the EPISTOP project proved
that preventive treatment decreased the risk and severity of
epilepsy. The study showed that preventive vigabatrin treatment
delayed the onset of seizures, reduced risk of drug-resistant
epilepsy, reduced the number of antiepileptic drugs required and
reduced the number of days with seizures.
Professor Jozwiak said the study also showed that a first
abnormal EEG or seizure onset at younger age is associated
with higher prevalence of developmental delay or autism and
that the prevalence of these was higher in patients with drugresistant
epilepsy.
Professor Jozwiak noted that no patients in EPISTOP
presented severe neuropsychological deficits at two years of age,
probably due to the close monitoring.
The EPISTOP results offer new insights into epilepsy
management. Whilst there is still more work to do, the results
have the potential to be used to develop recommendations for the
detection and treatment of epilepsy around the world, including
early interventions to improve outcomes.
The project also identified potential biomarkers for epilepsy
development.
EPISTOP results have the
potential to be used to develop
recommendations for the detection
and treatment of epilepsy in people
with TSC around the world, including
early interventions to improve
outcomes.
Professor Sergiusz Jozwiak
Based on the study results EPISTOP has formulated the
following clinical recommendations:
• Early diagnosis is a must. It enables close monitoring and
early intervention for epilepsy, developmental delay and
autism.
• Serial video EEGs should be carried out every 4-8 weeks
in the first two years of life and neurodevelopmental
evaluations should be carried out every six months.
TSA would like to acknowledge Professor Jozwiak and his fellow
collaborators, including Australian TSC clinical researcher Dr Kate
Riney and her colleagues at Children’s Health Queensland, for their
participation in EPISTOP. And, of course, we extend a huge thank
you to all of the children and families who took part in this study.
To find out more, please see https://tsa.org.au/epistop-researchprogram-results/
or visit www.epitstop.eu
17

Research
Research
News
Clinical characteristics of SEGAs in TSC
This study, conducted at 170 sites across 31 countries, looked at the
clinical characteristics of subependymal giant cell astrocytoma
(SEGAs) in children and adults with TSC. The data comes from
the TOSCA registry (TuberOus SClerosis registry to increase
disease Awareness), which was designed to provide deeper insights
into the manifestations of TSC and its management. Data from
patients of any age with a documented clinical visit for TSC in the
12 months preceding enrolment or those newly diagnosed with
TSC was included.
SEGA were reported in 25% of the 2,216 patients on the registry,
with the median age of diagnosis of SEGA being 8 years. SEGA were
more often associated with TSC2 mutations compared to those with
a TSC1 mutation. The study highlights that the rates of SEGA in
patients with TSC may be higher than previously reported.
SEGA caused symptoms in 42% of patients. The most common
symptoms among patients were increased frequency in seizures
(16%) and behavioural disturbance (12%). The main treatments
patients received were surgery and mTOR inhibitors.
Of interest, prior reports of SEGA growth after the age of 25 years
have been rare but, in this study, growing SEGA were reported in 19
patients who were over the age of 18. This confirms that, although
SEGA diagnosis and growth typically occurs during childhood, SEGA
can occur and grow in both infants and adults.
This study once more highlights the need
for all those with TSC to follow the
international recommendations for
The [study] confirms that
although SEGA diagnosis
and growth typically occurs
during childhood, SEGA can
occur and grow in both infants
and adults.
the surveillance and management
of TSC which recommends brain
imaging until the age of 25 years.
Jansen et al, Clinical
Characteristics of Subependymal
Giant Cell Astrocytoma in
Tuberous Sclerosis Complex,
Frontiers in Neurology, 2019 Jul
3;10:705. doi: 10.3389/fneur.2019.00705.
eCollection 2019.
Sirolimus therapy for cardiac rhabdomyoma in pregnancy
This is a case report of a pregnant 32 year old woman who had been
diagnosed with TSC when she was aged 24 and was being treated
with oral sirolimus to manage her lymphangioleimyomatosis (LAM,
a lung condition associated with TSC).
She stopped treatment when she became pregnant. At 21 weeks
into her pregnancy, cardiac echo found a cardiac rhabdomyoma
in her baby. Rhabdomyoma is the most common foetal cardiac
tumour, and its development is related to tuberous sclerosis. The
woman’s medical team recommenced sirolimus and continued to
monitor the pregnancy. A repeat cardiac echo at 29 weeks found no
visible cardiac rhabdomyoma. The woman continued on sirolimus
until delivery of her baby at 39 weeks. Her baby was born with
no cardiac rhabdomyomas, but was found to have subependymal
nodules and possible kidney lesions.
This is the first report of complete resolution of cardiac
rhabdomyomas in a pregnant woman with TSC treated with
sirolimus. But, the authors caution that further studies are needed
to determine the safety of the drug in pregnant women. This case
highlights the need for targeted imaging of pregnant woman with
TSC and the potential for early intervention.
Park et al, Sirolimus therapy for fetal cardiac rhabdomyoma in a
pregnant woman with tuberous sclerosis, Obstetrics & Gynaecology
Science, 2019 Jul;62(4):280-284. doi: 10.5468/ogs.2019.62.4.280. Epub
2019 Jun 21.
This is the first report of complete
resolution of cardiac rhabdomyomas
in a pregnant woman with TSC treated
with sirolimus…but…further studies
are needed to determine the safety of
the drug in pregnant women.
18 Reach
OCTOBER 2019 ISSUE 110
Out

Research
Gaps in surveillance
In 2016 the Comprehensive TSC Clinic was established at The Hospital
for Sick Children in Toronto, Canada. This new clinic wanted to
understand the gaps in service that those being referred to it may
have experienced. The clinic conducted a retrospective review of the
medical records of all its patients with TSC seen between January 2016
and December 2017. The aim was to see if appropriate surveillance,
as advised by the 2012 Tuberous Sclerosis Complex Consensus
Recommendations, was completed prior to these patients attending the
clinic.
The clinic saw 90 patients during this period who were aged less
than 18 years. The review of these children’s medical records found that
the majority had received the following TSC surveillance:
• central nervous system surveillance (EEG
and/or MRI)
• renal and cardiac surveillance
• genetic evaluation and counselling
• dermatological (skin), dental
and ophthalmologic (eyes)
surveillance.
However, the review
found the one area that
was poorly addressed was
This review suggests that
neuropsychiatric surveillance
patients and health
using the TAND checklist.
professionals should put
TAND stands for TSC
more emphasis on assessing
Associated Neuropsychiatric
and treating TAND.
Disorders and refers to the wide
range of cognitive, behavioural
and mental health challenges that
people with TSC are at risk of.
It is estimated that about 90% of
individuals with TSC will experience some
degree of TAND symptoms which may include features which may
include depression, anxiety, autism spectrum disorder, sleep difficulties
and cognitive difficulties. Yet, in this review of medical records, the
TAND checklist was completed prior to attending the clinic in only four
out of the 90 cases.
Early recognition of TAND symptoms allows for early intervention,
and treatments or programs that can help to meet the needs of
children and adults with TSC and their families. This review suggests
that patients and health professionals should put more emphasis on
assessing and treating TAND.
For more information on TAND and the TAND checklist visit
https://tsa.org.au/information/tand/
Surveillance and
management guidelines for
tuberous sclerosis
Tuberous sclerosis complex (TSC) is a genetic disorder that may affect nearly every
organ system. TSC affects people in many different ways and with differing degrees
of severity. Signs and symptoms of TSC can also progress at different rates in different
individuals. This diversity and variation make it challenging to determine what
healthcare is needed achieve the best quality of life for a person with TSC.
Healthcare professionals from around the world with expertise managing TSC have
developed guidelines for the surveillance and management of TSC. These have been
published in a series of peer-reviewed papers. This publication summarises these
consensus guidelines to help people with TSC, their families and health professionals.
WHAT IS TSC?
Tuberous sclerosis complex (TSC) is a
genetic disorder that affects many organs
and causes non-malignant tumors in the
skin, kidney, brain, heart, eyes, lungs, teeth
or oral cavity, and other organs. Individuals
with TSC may be initially diagnosed because
of involvement in any or all of these organs,
often depending on the age at which a
person receives the diagnosis.
Individuals of all ages may receive the
diagnosis of TSC depending on the signs and
symptoms they have. The diagnosis of TSC
may occur after the development of facial
angiofibromas in an adolescent, because
of the presence of heart tumours (cardiac
rhabdomyomas) in a newborn or the onset
of kidney problems in an adult. However, in
the majority of cases, the diagnosis of TSC
comes after the start of seizures.
The severity of TSC can range from mild to
severe, even within the same family if more
than one person has TSC. The diagnosis of
TSC and further evaluation of people at risk
for TSC involve careful examination of the
skin, heart, eyes, brain, lungs and kidneys,
as well as genetic testing. It is important to
know the disorder’s signs and symptoms
and to follow the recommendations for
screening and evaluating TSC.
It is estimated that TSC affects 1 in 6,000 live
births. Nearly 1 million people worldwide are
estimated to have TSC, with approximately
2,000 in Australia. TSC shows no gender bias
and occurs in all races and ethnic groups.
You can read more about the signs and
symptoms of TSC at
www.tsa.org.au/information
Alsowat et al, A Review of Investigations for Patient With Tuberous
Sclerosis Complex Who Were Referred to the Tuberous Sclerosis Clinic
at The Hospital for Sick Children: Identifying Gaps in Surveillance,
Paediatric Neurology, 2019 Jul 4. pii: S0887-8994(19)30511-9. doi:
10.1016/j.pediatrneurol.2019.06.018. [Epub ahead of print]
19

Research
Australian Families’
Experience with a TSC
Diagnosis
One of the not-for-profit organisations TSA collaborates with
is the Centre for Community-Driven Research (CCDR),
a non-profit organisation bringing change to community
engagement in health and research. Patient Experience,
Expectations & Knowledge (PEEK) is a research program
developed by CCDR. PEEK studies provide a clear picture and
historical record of what it is like to be a patient at a given point
in time. PEEK studies help inform how best to support patients
with treatments, information and care.
Earlier this year, in preparation for developing our new
diagnosis resources, CCDR completed a mini-PEEK study
investigating the experiences of 25 families from around
Australia when their child was diagnosed with tuberous sclerosis
complex (TSC).
The study found that it was most often white spots on the skin,
seizures and delayed development that provided the first clues that
led to a diagnosis of TSC. The most common health professional
to diagnose TSC was a neurologist or paediatrician, although GPs
were also commonly involved in the diagnosis process.
Half of the families in the study said that enough information
was given at diagnosis, and half that not enough information
was given, with one family saying they had no information at all.
Parents of newly diagnosed children wanted to find out about
disease management, treatment options, hereditary considerations
and genetics, disease cause and allied health information.
It was acknowledged that a TSC diagnosis is often a shock and
about 20% of those interviewed said they needed to get through
that shock before they were receptive to information.
More than half of those interviewed (60%) reported they
did not have adequate emotional support between testing and
diagnosis, with 35% of parents reporting they had no emotional
support at all.
There was recognition from parents that more tailored
information would be helpful at new diagnosis. There were
comments such as: “When my child was first diagnosed there
wasn’t really like a resource list for where to go, who to contact.
You know, you can get help in this area or that area. That would be
the biggest thing I think. If someone was recently diagnosed that’s
what I think would be most helpful initially.”
The study reports that most parents made treatment decisions
in collaboration with their health professionals, highlighting
the importance of that team in pursuing the right treatment
options. The importance of TSC specialists was highlighted, with
parents describing difficulties of having to educate their GPs,
paediatricians and other non-TSC specialists.
Half of those interviewed reported at least some difficulties
paying for basic necessities such as housing, food and electricity
as a result of TSC in their family. Many said that TSC had a large
impact on their ability to
work with half having
More than half of those
to reduce the number
interviewed (60%) reported
of hours they worked.
they did not have adequate
A quarter of these
emotional support between testing
families felt their
and diagnosis, with 35% of parents
reduced earning ability
reporting they had no emotional
had been an extremely
support at all.
significant burden of
the disease. Parents were
generally not informed of their
financial entitlements.
From the CCDR interviews, it was
clear that parents of children with TSC are very knowledgeable
about the condition and related symptoms and treatments. They
take a very active role in managing TSC and there is a lot to learn
to be able to do that job.
Parents said they were most interested in learning about what
causes TSC, how TSC is best managed and what the available
treatment options are. Health professionals provide some
information. Parents are also searching online for information to
improve their knowledge. Those interviewed said they preferred
to talk to someone and also go online for information, with most
identifying the combination of these as important. Interviewees
cited TSA as the most trusted information source, even more so
that health professionals (although the sample may be biased
because recruitment was done through TSA). Those interviewed
stressed that information has to be current and described old
information as not helpful and sometimes even harmful.
Many of those interviewed said they had a fear of progression
of TSC and concerns about their child reaching educational and/or
personal goals because of the disease.
There were many suggestions for advice to future TSC
families, including:
• allowing time to adjust
• learning as much as possible about TSC and becoming an
advocate
• seeking a second opinion
• connecting with support groups and seeking support
from family and friends
• sharing experiences
• being open to changes to lifefocusing on the positive.
TSA would like to thank all the families who participated in
this research and thank CCDR for undertaking the study. This
research is an important platform in the development of TSA’s New
Diagnosis “Parachute” Pack which is due to be launched in late 2019.
TSA would also like to acknowledge our partner nib foundation for
supporting this project.
20 Reach
OCTOBER 2019 ISSUE 110
Out

TSA Research Awards
Congratulations to
Dr Fiona McKenzie
Winner of the Elizabeth Pinkerton Memorial Award 2019
Tuberous Sclerosis Australia (TSA) is delighted to announce
that Dr Fiona McKenzie, Geneticist at the King Edward
Memorial Hospital for Women in Subiaco, Western Australia, is
the recipient of the 2019 Elizabeth Pinkerton Memorial Award.
This award is given annually with TSA to a health professional
in recognition of their efforts to improve the lives of people
affected with tuberous sclerosis complex (TSC) in Australia and
their families. Nominations for the award are open, via TSA’s
website, from May to July each year.
Members of the Australian TSC Community nominated
Dr McKenzie for this year’s award. She was recognised in
particular for her long-term perseverance in assisting one TSC
adult to search for the cause of their mosaic TSC, and for her
considered counselling to TSC families planning to conceive
a child. As one family commented: “Dr McKenzie counselled
us when we were planning to conceive and have our first child.
We wouldn’t have had the confidence to go forward without her
advice.”
Dr McKenzie joins the illustrious ranks of past winners of this
award which include Dr David Mowat, Dr John Lawson, Dr Kate
Riney, Dr Sean Kennedy, Dr Anne Halbert, Dr Simon Harvey,
Dr Helen Whitford and Dr Orli Wargon.
Lizzie Pinkerton
Elizabeth (Lizzie)
Pinkerton (1984 –
2010) had tuberous
sclerosis complex and
polycystic kidney disease.
Lizzie lived a life full of friends,
dancing and laughter. She
provided inspiration for her
family’s involvement in TSA,
which has continued for
over 25 years.
21

Fundraising
Snapshot
We need you! We depend on donations and fundraising from our TSC
community. We’d love you to get involved and support TSA if you don’t
already. You can make a big difference to our work – we need funding to
continue to help and support you, our TSC families. Please call us to discuss
how you can get involved on 0434 391 430 or email kate.garrard@tsa.org.au
Thank you to all our generous supporters around Australia who help
make our work possible.
Comedy for a Cure is coming to Sydney
Tickets are now on sale for Sydney’s first Comedy for a Cure to be held on Saturday
26 October at Paddo RSL. We hope you will join us for a night where we will harness
the power of laughter to raise critically needed funds to help people affected by TSC.
Comedy for a Cure will feature a fantastic line up of comedians with Peter Berner
headlining the show. We hope you will come along and bring your family and friends
too! More details on the back page of Reach Out.
Lizzie’s Lunch
The 6th annual Lizzie’s Lunch was held on Sunday 2 June at The Hills Lodge in Castle Hill.
It was a fantastic event made possible thanks to the extraordinary efforts and dedication
of Lizzie’s mum, Sue Pinkerton. There were many people who came together to make it a
special day. Thanks to our fantastic Master of Cereominies Ron Wilson, parent speakers
Natalie and Mark with their gorgeous boy Sammy, and our hard-working volunteers Paul,
Tom, Ellie, Sam, Nina and Deb. And, of course, thank you to all the generous guests in the
room who raised an amazing $22,000. These funds will have a big impact on TSA’s work
with and for the TSC Community.
Lizzie’s Lunch
#Heroes4Kristian
Kristian’s team of heroes have donated
almost $8,000 in honour of Kristian who
lives with TSC. On Sunday 31 March the
Kalymnian Club hosted a car and bike show
fundraiser for TSA. They had a great turn
out, despite the chilly Melbourne weather,
and raised $4,600. Thank you to everyone
who supported
this fantastic
event and to Jo
and Kon Romios,
Kristian’s
parents, for
inspiring
this generous
contribution.
Kristian
Memberships
TSA relies on memberships to fund its programs and services and ensure
everyone can access our services for free. We are grateful to all our members
for your generous contributions. Many memberships have recently expired.
We hope we can count on your support again this year. We have also set up a
recurring membership option. If you choose this, your membership will renew
automatically each July so you won’t have to worry about it expiring ever again!
Good news on grants
TSA has been working hard to secure grant funding for several new projects.
We’ve had some small and some big wins which we are very excited about.
We’d like to thank nib foundation, Ian Potter Foundation, Lotterywest, the
Centre for Community-Driven Research, Universal Charitable Fund and the
Department of Social Services for looking favourably upon our applications
and partnering with us to help people living with TSC. These grants will help
TSA launch new diagnosis resources, run educational events for families and
a TSA’s new nurse service.
22
Reach
Out
OCTOBER 2019 ISSUE 110

Fundraising
Meet our TSC Heroes
NIB team
Our partner nib foundation
got a team of 30 staff
together to participate in
Sydney’s City2Surf. They
raised $3,121 and then nib
matched every dollar. What
a fantastic effort!
TSC Hero Tess
Tess ran the London
Marathon and raised $2,000.
She is also going to participate
in the New York Marathon
later this year. Go Tess!
TSC Heroes Melissa and team
Our TSC Hero Melissa put
together a team of colleagues
from HMAS Warramunga for
Perth’s Run for a Reason. Here
is a photo of them training for
the big day. They raised $648.
Great job!
TSC Hero Natasha
Natasha ran in Sydney’s Half
Marathon on 15 September in
honour of her granddaughter
who was diagnosed with
TSC late last year. So far she
has raised $4,000. Well done
Natasha!
Will you be a #Hero4TSC?
Many of our TSC community already support our work in a variety of ways for which we are enormously
grateful. Now we are making it even easier to encourage your family and friends to donate in honour of
your family or the person you know with TSC under an individual #Heroes4TSC campaign.
See the photo we’ve created for Caleb’s hero page.
Set up a hero campaign. It’s simple! Just call Kate or visit https://tsa.org.au/heroes4TSC/
Sammy
Tax-time appeal,
another success
A massive thank you to everyone in our
TSC community who so generously
supported our tax-time appeal this
year. Gorgeous little Sammy helped us
spread our message. Over $7,000 was
donated to help fund our services and
program.
Budget Petrol Station
Thanks to the efforts of Lilly’s parents, Michael and
Chauntelle, customers visiting Earlwood’s Budget
Petrol Station have been encouraged to donate their
change to TSA with a donation tin at the register.
They raised $777. Great job!
Join our team of TSC Heroes
Do you run, walk, swim, cycle? Why not join our TSC Hero
team and participate in a fun run, marathon or triathlon as a
tribute to the person you know with TSC.
Our TSC Hero teams are located all around the country.
You can have a go and become a hero too. It’s easy – just follow
our TSC Heroes Facebook page, find an event in your city,
then engage with your family and friends to make donations.
Check out our website for more information.
Upcoming Fundraising Events
Sunday 13 October 2019 - Melbourne Marathon
Sunday 20 October 2019 - TSC Hero Burnie 10
Saturday 26 October 2019 - Comedy for a Cure, Sydney
Sunday 3 November 2019 - TSC Hero NY Marathon
Sunday 14 June 2020 - Save the Date - Lizzie’s Lunch
Thank you again to all our supporters for your extraordinary help. YOU make a
difference to people living with TSC. We couldn’t do it without you.
23

LAST CHANCE TO GET
YOUR TICKETS!
BUY YOURS TODAY!
Comedy for a Cure is coming to Sydney this
year on Saturday 26 October. This great
night will harness the power of laughter to
raise critically needed funds to help people
affected by TSC.
Please come along and invite your friends,
family and colleagues to join us too. It’s a
fun way for your network to show their
support. There is special reserved seating
for groups of 10 or more.
All funds raised from this night will be
used to ensure children and adults living
with TSC across Australia have access to
ground-breaking new treatments and
research that are taking us closer to a
cure for this devastating disease.
Get your tickets now!
www.comedyforacure.org.au