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,