One of Betty’s requests was for donations to be made to Tuberous Sclerosis Australia (TSA).

Betty’s granddaughter Amanda lives with a rare genetic condition called Tuberous Sclerosis Complex (TSC). Your donation will assist TSA in its work to help and support families affected by this devastating disease.

You may already know a little of the challenges Betty’s family has faced because of Tuberous Sclerosis Complex (TSC). Although Amanda has had more than her fair share of hospital stays, medical appointments, medications and therapies to make sure she has all the support she needs,  Amanda’s family are full of thanks for the amazing support from medical teams, family, friends and the team at Tuberous Sclerosis Australia.

Your contribution will help children with TSC in Australia now and in the future. It would mean so much to Betty’s family if you would please donate now.

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.

How your donation helps

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

Families contact us by phone, email and social media. We provide accurate and up to date information about various aspects of TSC. We can also refer them to resources that can help them such as a medical professional with TSC knowledge in their area

$125    allows an individual with TSC or their carer to attend an information event

Our face to face events provides an opportunity for people affected by TSC to learn more about the disease and meet others living with TSC. These can be life-changing experiences for many.

$450    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 will also help us to provide these services to families living with TSC:

  • Maintain this website, the only online source of TSC information for families living in Australia
  • Publishing and printing our magazine Reach Out
  • Providing phone and email support
  • Organising and hosting educational events throughout Australia
  • Advocate for improved services and treatment for families affected by TSC
  • Fund research into TSC in Australia

Our donors have also allowed us to complete these major research projects:

  • SEALS Genetic Diagnostic Laboratory, the first laboratory in Australia to offer genetic testing for TSC
  • Funding an Australian clinical trial into a new medicine for the signs of TSC on the skin

The vast majority of your money goes directly to these services. Much of our work is done by volunteers, working in their homes. This keeps our costs low and ensures your money goes to support people living with TSC. Your support, however big or small, is greatly appreciated.

Donate now in memory of Betty

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