How your Support Helps
Your donations and support go directly towards improving the lives of people living with TSC (Tuberous Sclerosis Complex). Every dollar TSA (Tuberous Sclerosis Australia) receives supports our purpose to create a better life and more hopeful future for everyone affected by TSC by providing knowledge, support and connection.
How your donation can make a difference
$50 allows us to answer a single support or information request
Our Nurse Service provides free advice to those affected by TSC. One call from a family about the importance of early diagnosis and intervention treatments and how to access them can change their child’s life.
$100 allows an individual with TSC or their carer to attend an information event
Our virtual and face to face events provide an opportunity for people affected by TSC to learn more about the disease and meet other people living with TSC. These connections can be life-changing and can help to reduce the sense of isolation.
$250 allows us to update one of our medical information pages
Our medical information pages are the only source of accurate TSC information tailored to the needs of TSC patients and their families in Australia. The significant achievements of TSC research mean that these information pages require regular revision.
TSA delivers on its purpose in the following ways:
- Through information and education. TSA provide accurate balanced information about TSC, best practice management and surveillance, latest research and treatment options. We do this by hosting TSC conferences and education events, the TSA nurse services, medically reviewed information on our website, information publications and our regular newsletter.
- By empowering people in the TSC Community. TSA works to enable people living with TSC to proactively manage their health and wellbeing and provide both emotional and practical advice via the TSA Nurse and medically reviewed information on our website.
- By providing essential and valuable connection. TSA connects people living with TSC to expert health professionals and relevant services and to other people facing similar challenges. We do this through the TSC Health Care Professionals Network, peer support via connections to Regional Contacts and creating opportunities for people living with TSC to meet up.
- Through advocacy. TSA raises awareness of TSC and advocates on issues such as access to health care and new treatments. We do this through collaborative partnerships with Rare Voices Australia and other peak bodies, media exposure, PBS submissions, and awareness events like TSC Global Awareness Day.
Our beautiful daughter Asta lives with TSC. In her short 6 years she has already endured so many hospital visits, tests, therapy appointments and most recently 2 brain surgeries for uncontrolled Epilepsy.
We’ve used so many of the amazing resources available on TSA’s website for our teachers and therapists. it’s been an absolute blessing having that information to provide to help others understand TSC.
TSA are doing such an amazing job helping so many families like ours on this challenging journey, from providing invaluable resources to fundraising and raising awareness of TSC. We are forever grateful to have them to turn to for information and support.
Additional information about how donations impact TSA’s work
Your donation today will help us continue to provide our trusted information and support services for free to everyone affected by TSC by:
- Maintaining this website, the only online source of accurate and up to date TSC information in Australia
- Providing a Nurse Service offering telehealth phone and email support
- Organising and hosting educational events online for everyone in Australia
- Advocating for improved services and treatment for families affected by TSC
- Ensuring TSC affected individuals have access to all the latest global research and advancements in TSC.
Our donors have enabled TSA to champion many life-changing projects in Australia including:
- Publishing a picture book to help children understand TSC
- Funding an Australian clinical trial into a new medicine for TSC skin tumours (angiofibromas)
- Creating New Diagnosis Parachute Packs for families receiving a new diagnosis of TSC
- Developing a SEALS Genetic Diagnostic Laboratory, the first laboratory in Australia to offer genetic testing for TSC
- Launching the In Safe Hands education resources to help teachers and educators understand how TSC may affect how a child learns
- Advocating for mTOR inhibitor medicines for TSC to be added to the PBS (Australian Pharmaceutical Benefits Scheme).
To find out more about how your donations make a difference, click here to read our latest Impact Report.
Your contributions go directly towards providing these important programs and services. All of our work is done by volunteers and staff working in their homes. This keeps our costs low, and ensures your money goes directly to support people living with TSC. Your support, however big or small, is greatly appreciated.
