Reach Out October 2019

autsc

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

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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.

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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

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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.

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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.

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OCTOBER 2019 ISSUE 110

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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.

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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

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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

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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

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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

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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

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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

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