What We’re Working On
All our work is with and for our TSC Community in Australia. Our priorities are set in conjunction with the TSA Committee and informed by regular surveys with our TSC Community. We are aware that not everything we do is visible to everyone in our Community, so here’s a run down of some of our current, less visible projects:
- Advocating for improved healthcare services and treatments for people living with TSC in Western Australia
- Working with pharma companies and clinicans to bring new research trials for TSC patients to Australia
- Advocating for Topical Rapamycin cream (a treatment for facial angiofibromas) to be approved by the Therapeutic Goods Administration (TGA)
- Collaborating to seek approval of Epidyolex (medicinal cannabis) for TSC patients
- Raising awareness of our new online resource for General Practitioners (GPs)
- Making families aware of Sydney Children’s Hospital’s TSC-STEPS research trial
- Partnering with Rare Voices Australia on a 3-year research project (Navigator) to inform health service navigation
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
- Running our telehealth nurse service so that everyone living with TSC in Australia has access to one-on-one support
- Maintaining relationships and regular contact with a wide range of TSC health care professionals nationally and globally
- 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
- Encouraging our Community to share their stories as we know these are both highly valued and widely read by our TSC Community
- Organising educational events and workshops for the TSC Community and health care professionals (subject to funding)
- Meeting the governance and compliance requirements of a small charity in Australia
- 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.
About us
More about TSA
We receive no government funding. Our ongoing success relies on your donations, membership, fundraising and corporate support. TSA’s ability to provide free services and support is thanks to the generosity of the TSC Community who are critical in inspiring family and friends to donate. Any support, big or small, can help change lives for people living with TSC. To find out more about how you can support TSA, please click here.
TSA was formed in 1981 as the Australasian Tuberous Sclerosis Society (ATSS). The organisation was established by volunteers from the TSC Community. To this day people with a personal connection to TSC remain closely involved. We acknowledge and thank our previous leaders particularly Lynn Wilson, Sue Pinkerton and Clare Stuart.