Since it was formed in 1981, 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.
In 2020, we will focus on:
- Assisting more families and individuals affected by TSC, throughout Australia, through our new Nurse service.
- Launching the new diagnosis Parachute Pack resources for families of the 50 babies that will be diagnosed with TSC in Australia in 2020.
- Hosting TSC Connect events on both the east and west coasts of Australia, to bring together TSC individuals, families and health professionals to learn about new treatments and research.
- Improving healthcare through expansion of the TSC Professionals network – adding additional GPs and specialists around Australia.
- Making sure our events include topics our TSC Community has said are of interest to them – including strategies to manage challenging behaviour and anxiety, research projects, treatment options for epilepsy and mTOR inhibitors.
- Increasing the availability of information through digital and online events such as webinars and podcasts.
- Expanding our reach and raising awareness of our services across Australia.
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.
Our 10 Point Plan
- Hold at least bi-annual Australian medical and family connect events to provideaccess 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.
Thank you to our corporate supporter, NetApp, for donating the services used to make this video.