We are shining a light on tuberous sclerosis complex (TSC) in memory of Annabelle who was just two years old when she passed away.

Every week in Australia a baby is born with TSC. It is a scary, uncertain and isolating experience when you first hear your child has this rare genetic disease.

TSC is devastating and unpredictable. It commonly causes brain tumours, unstoppable epilepsy, autism and developmental delays.

Tuberous Sclerosis Australia (TSA) is a guiding light for families when TSC comes crashing into their world. TSA works to inform, support, connect and empower the TSC Community.

Please help us support TSA in Lighting the Way for people with TSC by making a donation. We are running in the Gold Coast Marathon on 2 July to raise vital funds to help children and families facing the challenges of TSC.

Thank you, Amelia, Francis and Kelly xx

PS Tuberous Sclerosis Australia receives no ongoing government funding and relies solely on your generosity to provide vital information, support and advocacy services plus champion research so one day we may find a cure for this devastating disease.

Make a donation to help families like Annabelle's

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How your donation helps

$50    allows us to answer a single support or information request

Our TSC Information 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.

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
  • Publishing and printing our magazine Reach Out twice a year
  • Providing a TSC 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
  • Development of 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 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 annual report.

The vast majority of your contributions go directly to providing these important services and research. Much of our work is done by volunteers, 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.

Please donate now

Amount Raised

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0% raised of $ 500.00 Goal

Generous Supporters

Amelia pictured training for the Gold Coast Marathon