What We’re Working On

All our work is with and for the TSC Community in Australia, although we are aware that not everything we do is visible to everyone in our Community.  Our priorities are set in conjunction with the TSA Committee and informed by regular surveys with our TSC Community. Here’s a run down of some of our current projects:

• Advocating for improved healthcare services and treatments for individuals with TSC in Western Australia where EEG services have been suspended for families living with TSC. TSA lobbied the WA Health Minister which resulted in a round-table meeting with Perth Children’s Hospital (PCH) in December 2023. PCH is now trying to resource EEG services and keeping us informed of its progress. We are also working with Epilepsy WA to fully understand what our Community is experiencing when navigating treatment, testing and support services related to epilepsy or seizures in WA. Together we are aiming to get a full and complete understanding so we can lobby for change where change is needed. 
• Along with AFT Pharmaceuticals and a team of dermatologists at Liverpool Hospital in NSW advocating for Topical Rapamycin cream (treatment for facial angiofibromas) to be approved by the Therapeutic Goods Administration (TGA) and then PBS listed so that it is more widely and cheaply available for the TSC Community. We solicited and provided letters of support from a number of TSC health care professionals to support the TGA application. 
• Developing a new online resource for General Practitioners (GPs) to improve their understanding and management of TSC patients.
• Promoting Sydney Children’s Hospital’s TSC-STEPS research trial which is being led by the team at Cincinnati Children’s Hospital in the USA, which is a looking at early use of mTOR inhibitors in babies who have TSC. This trial is a potential game-changer. 
• Collaborating with a view to seeking approval of Epidyolex (medicinal cannabis) for TSC patients. 
• Collaborating with Rare Voices Australia on a 3-year research project (Navigator) to inform health service navigation and hopefully funding for consumer-led rare disease organisations.
• Running a telehealth nurse service which provides support and resources to individuals and families affected by TSC, including information about the condition, treatment options, and available support services. The telehealth service receives calls weekly, and its operation would not be possible without the generous support of the Community. 

In addition, we are also busy:

• keeping the information and resources on our website up to date and accurate for the more than 28,000 visitors per year
• publishing social media posts to keep our nearly 2,000 Facebook followers up to date on TSC-related developments
• publishing summaries so that our Community is aware of the most significant TSC research happening globally, 
• publishing monthly enewsletters to keep our Community informed of our activities
• writing Community Stories as we know these are both highly valued and widely read by our TSC Community
• maintaining relationships and regular contact with a wide range of TSC health care professionals nationally and globally
• meeting the governance and compliance requirements of a small charity in Australia 
• when funds allow, organising educational events and workshops (both online and in person) for the TSC Community and healthcare professionals
• fundraising to try to keep TSA in existence!

If you would like to see what TSA has achieved historically for the TSC Community in Australia over its more than 40 years, please click here.