As the only charitable organisation supporting people with Tuberous Sclerosis Complex (TSC) in Australia, Tuberous Sclerosis Australia (TSA) undertakes a wide variety of activities. We focus on connecting and supporting people affected by TSC throughout Australia and providing up-to-date information on TSC treatment and management. We work directly with people affected by TSC and their family members. We work with health care professionals and researchers in Australia and around the world.
Our vision is that together we can create a better life and more hopeful future for every individual living with TSC.
Formed in 1981 as the Australasian Tuberous Sclerosis Society (ATSS), our members include hundreds of families and individuals affected by TSC, 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.
TSA and its TSC community have already seen huge advances in the understanding and treatment of this complex condition. The outlook for a child born with TSC today is very different to that of a child born even just 10 years’ ago. Through earlier and more effective interventions we can continue to bring hope as we work towards a cure for TSC.
Our work includes:
Education and Connect Events
TSC conferences, seminars and workshops are held around Australia. TSA also hosts regular online zoom education events on a wide range of medical and non-medical TSC-related topics.
In 2007, 2011 and 2015, joint TSC medical and family events helped TSC health professionals to share the latest research and connect with other TSC specialists. The next major medical and family event is planned for 2021. Travel subsidies are sometimes available to encourage TSC families from interstate to attend.
Each May for TSC Global Awareness Day, our regional contacts and community members host events around Australia.
Expert Information and Support
This website contains medically reviewed information pages and a rich set of resources and articles about TSC. It is regularly reviewed and updated to ensure the information is both current and accurate.
We publish Research Round Up which features the latest research into TSC, a magazine Reach Out and monthly enewsletters which include personal stories and other information on the many aspects of life with TSC.
To help connect those affected by TSC and raise awareness of this condition, TSA is also on Twitter and Instagram, and has a Facebook page and facilitates a closed Facebook discussion group for those affected by TSC in Australia and New Zealand.
TSA also provides TSC information to medical and health care professionals.
TSA Nurse Service
TSA has a part-time nurse (Kim) who can help with any questions and/or concerns about tuberous sclerosis complex (TSC). This is a free, confidential information and support service which provides TSC information and links to practical support. You can book a time to talk with Kim by completing the booking form on this website or by emailing [email protected]
TSC Health Professionals Network
TSA maintains the TSC Health Professionals Network, a listing of health professionals who have a professional interest and/or particular knowledge about TSC.
TSA advocates on behalf of those affected by TSC on issues such as access to new treatment, co-ordinated health care and support services. We collaborate with larger organisations including Rare Voices Australia and the Consumers Health Forum to achieve these outcomes.
The Lizzie Pinkerton Memorial Award
This TSA award encourages and rewards exceptional work by a health professional to improve the lives of families living with TSC in Australia and New Zealand. This award was established in 2011 and is announced at TSA’s annual general meeting each year.
We have defined five principles that guide our work.
1. Australians affected by TSC have access to relevant, accurate and balanced TSC information and have the support that allows them to face the challenges of TSC
2. Australians affected by TSC have access to the best possible health care
3. Our TSC community has access to, and knowledge of developments in global and Australian TSC research
4. TSA’s work is funded through diverse and efficient fundraising
5. TSA is strong, reputable and well-governed
Our 10 point plan
- Hold at least bi-annual Australian medical and family connect events to provide access to the latest research and up to date
- Establish TSC Connect events for adults living with TSC in every major city in Australia
- Promote the benefits of the holistic care approach with the aim of establishing a TSC clinic in every state and territory
- Champion new research here in Australia that supports global research developments particularly in investigating early intervention and looking further at the potential of mTOR inhibitor treatments
- Build upon our regional network to even better connect those who are living with the challenges of TSC, enabling them to share experiences and provide peer support
- Fill gaps and improve our connections with a broad range of TSC health professionals – including GPs – helping them stay up to date with TSC and enabling TSA to provide its community with referrals to TSC health professionals across Australia
- Create forums for TSC professionals to discuss and collaborate on TSC cases and ensure the best possible care
- Ensure everyone in Australia affected by TSC knows about us and has access to our information and support
- Develop podcasts featuring interviews with clinicians, researchers, TSC affected individuals and others on topics like TSC research, TSC-associated Neuropsychiatric Disorders (TAND), seizure control and more
- Provide regular, free, informational calls for those living with the challenges
Our goal is to improve the journey for every one affected by TSC, making sure they get access to life changing early intervention, the right tests, the best possible treatments, and to the experts in the field.
Diversity – We recognise everyone’s unique experiences and contribution.
Excellence – Our services and activities are of high quality.
Equity – We aim to provide services that are accessible by all Australians affected by TSC.
Openness – Our decision making and communications are clear and transparent.
Independence – We value our independence and are accountable to TSA members.
Partnership – Working with other organisations and individuals, including supporters, is critical to achieve our vision.
Our strategic plan guides our annual business plans. We regularly review and adjust our plan to respond to the needs of people affected by TSC and available resources.
In 2020/21, we will focus on:
• Hosting and facilitating successful Zoom education events on a wide range of TSC-related subjects, such as sleep strategies, getting the best out of the NDIS, legal planning and more.
• Launching new online resources to support families advocating for their children with TSC in the school system and a companion guide, “In Safe Hands” to help teachers and school staff better understand, educate and manage children with TSC.
• Upgrading our data and IT systems so that we can improve our ability to easily and readily connect and support people in Australia living with TSC with appropriately targeted resources.
• Investigating virtual connection forums for people living with the challenges of TSC eg, grandparents discussion group; phone forum for young adults.
• Improving health care through continued expansion of the TSC Professionals Network.
• Revamping our popular biannual magazine, Reach Out. A survey of readers in April 2020 revealed that 83% of respondees read Reach Out from cover to cover and find the magazine interesting and useful.
• Continuing to provide one-on-one support to anyone in Australia affected by TSC through our telehealth TSA Nurse Service.
TSA has a track record of achieving a lot with little resources, there is still so much we want to do. Our needs are big. Our resources and our funding are small.
Tuberous Sclerosis Australia Inc. is an incorporated association under New South Wales law.
We are registered with the Australian Charities and Not-for-profits Commission (ACNC).