| About ATSS |
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The Australasian Tuberous Sclerosis Society (ATSS) was formed in 1981 and has always been run by The volunteers, most of whom have Tuberous Sclerosis (TSC) or someone in their family with TSC. ATSS members include hundreds of families, in addition to professionals from the medical, caring and education fields. ATSS is a founding member association of Tuberous Sclerosis Complex International (TSCi). ATSS’s vision is that: TSC families are empowered, through access to information and support To achieve this, the voluntary ATSS committee focuses most of its activity on connecting up TSC families throughout Australia and New Zealand 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. ATSS projects include: Education and Social Events: The Sydney-based committee run annual seminar days and semi-regular weekend conferences with experts in TSC presenting to families. Travel subsidies encourage TSC families from interstate to attend. In 2007 and again in 2011, the conferences have been run in parallel with a medical conference, where medical professionals hear the latest research into TSC and connect with other TSC specialists. Outside of Sydney, ATSS partners with Epilepsy Action to run a TSC stream at the regular Top of Mind symposiums. Regional Co-ordinators also run social and educational events. Reach Out, DVD, 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. The ATSS DVD, You Are Not Alone, includes the stories of several families affected by TSC. The ATSS website and Facebook group are also useful ways to get up to date information on TSC and ATSS. Enhancements to the ATSS website are planned for 2012. Telephone and Email Support Committee volunteers provide one on one support the families via phone and email. Information is also provided to medical and health care professionals Genetic Testing: ATSS has funded South East Area Laboratory Services (SEALS) 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 Rapamycin Trial: ATSS has raised over $200,000 to fund a clinical trial into the topical use of Rapamycin 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, if successful, will lead to an effective treatment as an alternative to painful, repeat laser surgery.
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