Natalie Stack was about to turn 12 when she made a birthday wish: She wanted her disease to “go away forever” so that no other child would have to suffer in the future. The disease she was talking about: cystinosis, a rare condition that destroys the body’s organs, including the kidneys, eyes, liver, and brain.
That same year, Natalie’s parents, Geoffrey and Nancy Stack, jumped into action and founded the Cystinosis Research Foundation (CRF). It’s now the largest provider of cystinosis research grants in the world. Here’s a look at its impact.
100%
Portion of donations directly funding research. Since CRF’s launch, operational costs have been privately underwritten.
$73 million +
Amount of money raised by CRF since its founding in 2003
13
Number of countries where CRF researchers and scientists are working to find a cure
$6.6 million
Value of CRF grants to Dr. Stéphanie Cherqui, a San Diego-based researcher who developed a stem cell transplant treatment that has shown promise in clinical trials
1 and 1
CRF efforts have led to one FDA-approved drug and one FDA-approved clinical trial for a cure.
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