Tuberous Sclerosis Australia was established as The Australasian Tuberous Sclerosis Society in 1981.
The organisation was established by Lynn Wilson, a mother of a child with Tuberous Sclerosis, who also had TSC herself. For many years it was lead by Sue Pinkerton, whose daughter Lizzie had TSC.
In 2014 we changed our name to Tuberous Sclerosis Australia (TSA) as we celebrated the launch of Tuberous Sclerosis Complex New Zealand (TSCNZ). TSA and TSCNZ will work closely together to provide information and support to families affected by TSC throughout Australia and New Zealand.
Debbie Crosby, President
Debbie and her husband Anthony have 2 beautiful daughters, Alana who is 8 years old and has Tuberous Sclerosis and Sophie who is 5 years of age. Alana was diagnosed at 7 months old and has autism, a developmental delay and epilepsy. Through TSA, Deb and Anthony have met many other families in the same situation as them and Deb decided to join the committee so she too could help other families. Debbie currently works in Community Services.
You can read Alana’s story here.
Kate Norris, Vice President
Kate has joined the committee in 2012 and has skills in consumer advocacy, social research and policy which she is keen to make use of while on the ATSS committee.
The eldest of her two young boys has Tuberous Sclerosis.
Patrick Norris, Treasurer
Picture and biography to come
David Matheson, Secretary and Editor of Reach Out
David is mildly affected by Tuberous Sclerosis Complex. He was diagnosed at the age of 26 after investigations into some skin markings.
You can watch a video of David telling his personal story here. In 1995 David joined the committee and is the Editor of TSA’s magazine Reach Out.
David works as a school counsellor.
Hayley & her husband David have 2 gorgeous sons, Damien and Bradley. Hayley and her son Bradley both have Tuberous Sclerosis Complex. Hayley is very mildly affected and diagnosed at age 4 because of her facial growths (angiofibromas). Bradley was diagnosed at 3 months of age and has epilepsy, developmental delay, autistic tendencies and is non-verbal. Hayley joined the committee in 2008 and between 2009 and 2014 also held positions of Treasurer and Membership Secretary. Hayley also manages the TSA Facebook discussion group and contributes to community awareness and fundraising activities.
Kate lives in Melbourne and has two sons, Alex who is almost fifteen and Hamish who is seven. Hamish has Tuberous Sclerosis. He has global developmental delays, loads of personality and attends a local specialist school. He has also undergone four rounds of neurosurgery for his epilepsy, which is now well controlled. You can read more of Hamish’s story here. Kate comes from an IT background and joined the committee in order to make a contribution to the Tuberous Sclerosis community.
Our support volunteers and regional contacts provide peer support over the phone and in their local areas.
Sally Nicholson, phone support
Sally and her husband Elliott have two children, Amelia who is 18 and has Tuberous Sclerosis and Lachie who is 14. Amelia was diagnosed at 4 months of age, she has a moderate intellectual disability and epilepsy. She attends a IO class in a mainstream high-school, she enjoys riding her trike, walking her dog Simba and trying to get the family cat to behave! Elliott has recently taken up triathlons and hopes to raise more money for TSC.
Our regional contacts work with local families to share information and experiences. To protect their privacy, we do not share their contact details here. Please contact us to get in touch with them.
New South Wales
Clare Stuart (nee Pinkerton) is our first employee. After volunteering for over 10 years, Clare is now the TSA Project Manager and is working on expanding the support we provide to TSC affected families.
Clare’s sister Lizzie had Tuberous Sclerosis. Clare has a professional background in IT and management consulting and is studying for her Masters in Public Health at The University of Sydney.
Our work is supported by our team of medical advisors.
- Dr Sean Kennedy, nephrologist at Sydney Children’s Hospital
- Dr John Lawson, paediatric neurologist at Sydney Children’s Hospital
- Dr David Mowat, clinical geneticist at Sydney Children’s Hospital