I am fundraising 10K to help build a future where no child suffers from Sanfilippo Syndrome.
In 2017 I was diagnosed with eosinophilic fasciitis, a rare autoimmune disorder impacting a few thousand people globally. Within months, my body stiffened and muscles shortened to the point I could not clench my fist or reach my feet to put my shoes on. We don't know why, we just know how to treat it.
Years on, I consider myself lucky to have beaten this disorder so in Nov 2020, I'm running in the New York Marathon. It's going to be a big challenge. But it's nothing compared to the challenge facing kids with Sanfilippo.
As a father of 3 kids, it breaks my heart that children with Sanfilippo have a really short life span. No parent should ever suffer the grief of burying their own children. The answer is science however the unfortunate reality is that these rare disorders are not heavily funded, big pharmaceutical companies just won't see the ROI. This is where you can help make a difference.
100% of your donation will go towards funding vital research projects that show potential to halt disease progression; repair damage caused by the condition; or improve the quality of life for children suffering from Sanfilippo.
All donations over AU $2 are fully tax deductible.
Thanks so much for your support.