$2,584.26
$6,000
Running for newborn babies with rare disease Tuberous Sclerosis Australia Incorporated
Running for newborn babies with rare disease
$2,584.26
$6,000
Tuberous Sclerosis Australia Incorporated
Running for newborn babies with rare disease
Running for newborn babies with rare disease

Michelle's page has now expired

300 days ago, Michelle created this page in support of Tuberous Sclerosis Australia Incorporated.

With the help of Team TSC Heroes, Michelle gave everything:

  • They posted 5 times.

  • Shared their page with everyone they could.

  • Received 30 donations from generous family and friends.

  • Raised $2,584.26.

My Story

So I’ve signed up for City to Surf, and actively doing some training, and I thought I’d seek to do some fundraising while I’m at it to support a research program focused on newborn babies with a rare genetic disorder called Tuberous Sclerosis Complex (or TSC for short).

The research focusses on epilepsy (uncontrollable seizures) in newborns and is being run out of TSC clinic in Brisbane, in collaboration with TSC experts around the world. Through this research a life changing early intervention program is being developed for these little people. This involves monitoring and treating seizures aggressively with both medication and surgery. The early results of the research to date suggest this intervention program will drastically reduce these babies’ risk of lifelong seizures, autism and intellectual impairment.

The challenge: There is no commitment to funding the finalisation of this research, either through government or other means, which is not much in the grand scheme of things ($60K). Once funded, the results can be written up, published and put into clinical practice. The sooner we do this, the more Australian babies will benefit from this life-changing and hope-giving new treatment approach.

The ask: I want to make a dent in getting this funded sooner rather than later. 60K is aspirational, 6K (or 10%) is what I’ll look to target, but any contribution that you could make would be really appreciated.

As a parent of a small person, my heart breaks when I hear these families stories. As someone that lived with childhood epilepsy it’s a scary thing for a kid to go through, and these little people are dealing with the worst possible kind. This is my way of helping, if there was any chance you could help me along the way I’d really appreciate it.

Thanks for listening,

Michelle

Team

Team TSC Heroes

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We're here to help our amazing TSC Heroes run in this iconic Sydney race. All funds raised will support families living with tuberous sclerosis complex - a rare genetic disease that causes tumours, autism, epilepsy and much more. TSA provides them with accurate and up to date information, someone to turn to when they need support, and the health care they need to have the best life possible.

Visit Team
Team

Team TSC Heroes

Blob

We're here to help our amazing TSC Heroes run in this iconic Sydney race. All funds raised will support families living with tuberous sclerosis complex - a rare genetic disease that causes tumours, autism, epilepsy and much more. TSA provides them with accurate and up to date information, someone to turn to when they need support, and the health care they need to have the best life possible.

Visit Team

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The 2018 Sun-Herald City2Surf presented by Westpac

12 Aug 2018 Visit this campaign

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Tuberous Sclerosis Australia Incorporated