Thank you to everyone who has become a hero for our boy by making a donation in Samuel’s honour.

You may already know a little of the challenges our family has faced because of Tuberous Sclerosis Complex (TSC).

Although our family has had more than our fair share of hospital stays, medical appointments, medications and therapies to make sure Samuel has all the support he needs. We are full of thanks for the amazing support from our medical teams, family, friends and the team at Tuberous Sclerosis Australia (TSA).

Join our team of heroes fighting to improve the diagnosis and treatments for children like Samuel by making a gift in Samuel’s honour to support all Australian families living with TSC.

We believe so much in the work of TSA who help and support families like ours affected by this complex disease. Your contribution will help children with TSC in Australia now and in the future.

It would mean so much to us if you would please donate now.

You can also purchase bumper stickers at a cost of two for $12 and all proceeds will be directly donated to TSA. Click here.

Thank you so much,

Yvette and Amber 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.

p.p.s a big shout out to our wonderful friend Melissa who has been running at events around Australia to raise awareness and funds in honour of our Samuel. Your dedication to helping families like ours since Samuel was diagnosed with TSC has been incredibly heart-warming and inspiring. Thank you!

 

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.

#Heroes4Samuel

Total Amount
 
Billing Name and Address
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Amount Raised

$ 6,177.27
100% raised of $ 5,000.00 Goal
39 donation(s)

 

Samuel with TSC Hero, Melissa

 

Samuel’s TSC Heroes

Melissa Maher
Helen Johnson
Giorgetta Garrahy-Hodgkiss
Callum Crocker
Yvette Reid
Josiah de Weger
Johan Venter
A. Dett
Robyn Alexander
L.G. Murr
Sharon Scalzo
Renae Scalzo
Caitlin Frost
N. McCormack
Brooke Cool
Clare Stroud
Kathy Ede
Melissa Maher
Melissa Maher
Melissa Maher
Phil Morris
Katherine Norris
Bridie Jordan
Deb and Lee Beck
Daniel Brook
Julie Norman
Melissa Maher
Virtual Runner
Melissa Maher
Simone Maris
Melissa Maher
Heidi Layland
Suzette Heggie
Steve Henderson
Stumpy Woods
Melissa Maher
Dani Tippett
Yvette Reid
Belinda Skinner
Buy your bumper sticker to support #Heroes4Samuel
Samuel with his sister Arianna, and mums Amber and Yvette
TSC Hero Melissa at Bondi after running the City2Surf