Reach Out, October 2017, issue 106

TSA News
Contents
Editorial................................................................................................. 3
President’s Report................................................................................. 4
Sue and Ross Life Membership........................................................... 5
Access to mTOR Inhibitors for Epilepsy ........................................... 6
Congratulations Drs Sampson and Kingswood ............................... 6
Webinars................................................................................................ 7
Picnics.................................................................................................... 7
Taylor Doyle.......................................................................................8-9
Celebrations .......................................................................................... 9
All About Kidneys.........................................................................10-12
Just Between Us ............................................................................. 13-18
Meet the Researcher: Denise Chan .................................................19
International Research ...................................................................... 20
Topical Rapamycin Update................................................................21
Medicinal Cannabis Update...............................................................21
Fundraising Snapshot...................................................................22-23
Our cover image is of silver medal winning Paralympian Taylor Doyle. Read Taylor’s story on page 8.
Photograph is courtesy of Jason Doyle from Studio Commercial (www.studiocommercial.com).
Thank you Jason, for taking this beautiful image of your niece.
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. Champion an active research program in Australia that works towards
a cure for TSC
President Debbie Crosby
Vice President Vacant
Treasurer Patrick Norris
Secretary Alison McIvor
Committee Members Adish Chandra
Georgina Schilg
Michael Jones
Michelle Purkiss
Public Officer Debbie Crosby
Medical Advisory Board Dr David Mowat,
Clinical Geneticist
Dr John Lawson,
Paediatric Neurologist
Dr Sean Kennedy
Paediatric Nephrologist
General Manager Clare Stuart
Fundraising and Kate Garrard
Communications
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 info@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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Reach
Out
OCTOBER 2017 ISSUE 106