Reach Out April 2018
Information about tuberous sclerosis and news from Tuberous Sclerosis Australia. This issue includes a special focus on siblings.
Information about tuberous sclerosis and news from Tuberous Sclerosis Australia. This issue includes a special focus on siblings.
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TSA News<br />
Contents<br />
Editorial................................................................................................. 3<br />
President’s Report................................................................................. 4<br />
Proposed Constitutional Changes...................................................... 5<br />
Notice of Annual General Meeting.................................................... 5<br />
Meet Kate - TSA’s Fundraising Lead................................................... 6<br />
TSC Global Awareness Day - #Tatts4TSC.......................................... 7<br />
Celebrations - Back to School...........................................................8-9<br />
Sibling Stories................................................................................. 10-15<br />
Siblings: The Longest Relationship.............................................. 16-18<br />
A New Resource to Explain TSC to Children..................................19<br />
Life Expectancy for People with TSC................................................19<br />
Research News...............................................................................20-21<br />
Remembering Loren & Tonya...........................................................21<br />
Fundraising Snapshot...................................................................22-23<br />
Our cover image is of Lachlan and Cooper Herbert. You can read Cooper’s story on page 11. Thank you to<br />
Christy and Scott for sharing this photo of your beautiful boys.<br />
Tuberous Sclerosis Complex (TSC) affects more than 2000<br />
individuals in Australia and thousands more carers, families and<br />
friends who live with the impact of the disease.<br />
TSC tumours can grow in any organ of the body, commonly affecting<br />
the brain, skin, heart, lungs and kidneys. TSC can cause epilepsy,<br />
developmental delay and autism. There is no known cure for TSC, but<br />
with appropriate support most people with TSC can live fulfilling lives.<br />
Tuberous Sclerosis Australia<br />
Works to connect, inform and empower people affected by tuberous<br />
sclerosis complex as we work towards a cure for TSC.<br />
TSA was established in 1981 as a volunteer organisation to connect families<br />
living with TSC. We have hundreds of members including people with TSC and<br />
their families along with health, education and caring professionals.<br />
Our priorities<br />
1. Ensure Australians with TSC have access to the best possible healthcare<br />
2. Provide up to date and accurate information to all Australians with TSC<br />
3. Support individuals and families affected by so no one has to face the<br />
challenges of TSC alone<br />
4. Champion an active research program in Australia that works towards<br />
a cure for TSC<br />
President Debbie Crosby<br />
Vice President Vacant<br />
Committee Members<br />
Treasurer Patrick Norris<br />
Secretary Alison McIvor<br />
Adish Chandra<br />
Georgina Schilg<br />
Michael Jones<br />
Michelle Purkiss<br />
Public Officer Debbie Crosby<br />
Medical Advisory Board Dr David Mowat,<br />
Clinical Geneticist<br />
General Manager<br />
Fundraising and<br />
Communications<br />
Dr John Lawson,<br />
Paediatric Neurologist<br />
Dr Sean Kennedy<br />
Paediatric Nephrologist<br />
Clare Stuart<br />
Kate Garrard<br />
The TSC Information Service<br />
Visit our website for extensive information about TSC for individuals, their families and<br />
professionals www.tsa.org.au<br />
Call or email us to speak to one of our volunteers. We have regional contacts throughout Australia<br />
who can meet face to face and connect you with local services<br />
1300 733 435 info@tsa.org.au<br />
Not in Australia or New Zealand?<br />
TSA is a founding member of Tuberous Sclerosis Complex International,<br />
a worldwide association of TSC organisations. The TSCi website<br />
contains a directory of TSC organisations around the world<br />
www.tscinternational.org<br />
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<strong>Reach</strong><br />
<strong>Out</strong><br />
APRIL <strong>2018</strong> ISSUE 107