As the only organisation for Tuberous Sclerosis in Australia, Tuberous Sclerosis Australia undertakes a wide variety of activities to benefit the individuals living with TSC and their families in Australia. These include education, support services, advocacy and research.
Formed in 1981 as the Australasian Tuberous Sclerosis Society (ATSS), we have always been run by volunteers, most of whom have Tuberous Sclerosis (TSC) or someone in their family with TSC. Our members include hundreds of families, in addition to professionals from the medical, caring and education fields. We are a founding member association of Tuberous Sclerosis Complex International (TSCi) and work closely with Tuberous Sclerosis Complex New Zealand.
Our vision is that:
TSC families are empowered, through access to information and support
To achieve this, we focus our activity on connecting TSC families throughout Australia and providing up to date information on TSC management and treatment. When families have access to current information and have a strong support network, they are empowered to strive for the best outcomes for themselves and their TSC affected family member.
Our work includes:
Education and Social Events:
Annual conference around Australia and additional regular seminar days include experts in TSC presenting to families. Travel subsidies encourage TSC families from interstate to attend. TSA also partners with other organisations such as Epilepsy Action to run a TSC stream within their events. In 2007, 2011 and coming up in 2015, TSC medical conferences allow medical professionals heard the latest research into TSC and connect with other TSC specialists.
Each May for TSC Global Awareness Day, our regional contacts host social and educational events around Australia.
Our magazine, website and other publications:
Published twice a year, Reach Out provides TSC families with a journal full of personal stories, the latest research into TSC and other information on the many aspects of life with TSC.
This website contains medically reviewed information pages and a rich set of resources and articles about TSC.
Telephone and Email Peer Support:
Our volunteers provide one on one support to families via phone and email. Information is also provided to medical and health care professionals.
We maintain the TSC Professionals Directory, a listing of health professionals who have made a commitment to stay up to date with best practice in the diagnosis, surveillance and management of TSC.
We advocate on behalf of families with TSC on issues such as access to new treatment, co-ordinated health care and support services. We collaborate with larger organisations including the Consumers Health Forum to achieve these outcomes.
The Lizzie Pinkerton Memorial Award:
This award encourages and rewards exceptional work by a professional to improve the lives of families living with TSC in Australia and New Zealand. This award was established in 2011 and is awarded at the annual general meeting in August each year.
We funded South East Area Laboratory Services (SEALS) in NSW to provide genetic testing for Tuberous Sclerosis in Australia. Genetic Testing for TSC can be accessed through the genetics department of most major hospitals. Genetic testing can be useful to confirm a diagnosis, make informed decisions about future children and to access pre-implantation genetic diagnosis and pre-natal testing.
Topical Cream Trial:
We raised over $200,000 to fund a clinical trial into the topical use of mTOR inhibitors to treat angiofibromas, one of the skin manifestations of TSC. This trial is being run in conjunction with 10 other centres in North America and is generating data necessary to have this effective treatment as an alternative to painful, repeated laser surgery.