Once upon a time, and not all that long ago, there was no-one to reach out to and connect with when you first heard the scary words Tuberous Sclerosis Complex. With no internet you couldn’t simply google information about this unknown disease and there were no specific TSC treatments – one could only dream of a cream that could make your angiofibromas vanish.

Fast forward to today, just forty years later, and there is an extensive team of people to help and support everyone in Australia affected by TSC. There are now many TSC experts, accessible and up to date online information, new clinical trials and best of all, there is hope for the future.

But we need you to help us, so we can continue to help you and families like yours.

Please give a tax-time donation to Tuberous Sclerosis Australia today.

With your help, our team can make sure TSA can continue to provide:

  • A dedicated TSC nurse service providing support and advice on treatment options.
  • Opportunities to be involved in new research.
  • A trusted TSC website with accurate information on the disease and new treatments and global research updates.
  • Connections to other people who also live with TSC – someone who understands and may be able to provide some insights and hope for the future.

It is thanks to a visionary team of parents, most of whom had children at home with disabilities caused by TSC, that we have these wonderful programs and services available to you today. These volunteers reached out to others facing similar challenges, counselled each other over the phone late into the night, and gathered a team of expert health care professionals to be champions in this field.

For forty years, this team of mostly volunteers has been helping and supporting families living with Tuberous Sclerosis Complex. It has taken a team of families, volunteers, donors and health professionals to get us where we are today. But there is still much to do. There is still no cure.

Will you be part of our team and make a tax-time donation today? 

Without the help and support of the TSA team, my journey as a mother of a child with TSC would have been so much more challenging and I am thankful every day for all the people who have worked tirelessly for decades so families like mine can have the information and support we need to face the daily challenges life with TSC brings. Please join team TSA by donating today and help make a positive impact on families like mine.

Heartfelt thanks

Debbie Crosby,TSA President and mother of Alana

 

Give now to TSA's tax-time appeal

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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.

 


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