TSA is a wonderful organisation who provide much-needed support to families with a Tuberous Sclerosis Complex diagnosis. Families like ours.
Without TSA, Matt would have been given the wrong treatment for his kidneys. Tuberous Sclerosis Australia connected us with the leading Tuberous Sclerosis kidney specialist who is based in the US who was able to review our case and work with our doctors to avoid unnecessary surgery.
Without the expert help and support from TSA, Matt would have had both kidneys removed and living 5 years on dialysis with a Cancer diagnosis before he would have been eligible for a kidney. Thanks to TSA’s help Matt has been able to live a fulfilling life and prolonged the need to remove his kidneys until they fail naturally.
I can’t thank them enough for the support they gave our family – not only linking us to the right resources but to be a sounding board while we were going through the scariest time of our lives. This is my way to give back. Please come to the charity screening or make a donation.
Cynara aka The Shrinking Wife xx
p.s.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.
$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 to the Shrinking Wife's fundraiser