Last year, I set up a new charity called Findacure in order to help patients with ultra rare diseases.
This came out of my personal experience of trying to find a cure for Black Bone Disease, the rare genetic disease affecting my children. Ten years of fighting to raise funds and organising trials made me acutely aware of the uphill struggle facing all patients with such diseases.
With desperate parents of young patients frequently contacting me for advice, I realised that something had to be done on a more systematic and larger scale to help them.
Today, Findacure helps people such as the parents of Sam, a young boy with Niemann Pick C, which is a rare brain disease also called the Childhood Alzheimer’s that kills children in their early teens. We help parents such as Jayne, the mother of a child with an ultra rare cancer called PAWS-GIST. We’ve helped patient groups working on Muscular Dystrophy, Ataxia, and dozens of other diseases.
We’ve raised more than $16,400 of our $25,000 target. We have four days left to raise the remainder! Can you help us please?
If so, please contribute here.
(One of our donors will match-fund everything we raise: for each dollar donated, he will put in an extra dollar – hence doubling all donations.)
Please share widely on your networks!
With best wishes and kind regards,
Dr Nicolas Sireau
Chairman and Co-founder
Findacure: the Fundamental Diseases Partnership
AdviceSpace, 66 Devonshire Road,
Cambridge CB1 2BL, UK