December 22, 2016
Suzanne Crane wrote -
Calliope Joy Foundation wrote -
Imagine there is a miraculous gene therapy that could save your child from a degenerative neurological disease. What would you do if this treatment was not available in the US? That is the dilemma facing families diagnosed with leukodystrophy. Promising new treatments proven to save children's lives exist, but doctors in the US don't have access to these breakthroughs. It's too late to save our daughter Cal, but we want to help doctors bring pioneering treatments for leukodystrophies to the US.
This $500,000 grant will go to doctors to kickstart research in the United States.
Pat Carr and Maria Kefalas, co-founders The Calliope Joy Foundation, parents to Callie Carr, diagnosed with late-infantile onset metachromatic leukodystrophy in 2012