Remember the elation you felt bringing your newborn home from the hospital?
Imagine, a few weeks later, learning that this beautiful little person would never crawl, or walk, or even say "Mama"...because your child has a degenerative and fatal brain disease for which there is no cure.
That is the nightmare facing parents whose children are diagnosed with Canavan Disease. This rare genetic disorder results in severe neurological dysfunction and eventually causes the brain to degenerate into a spongy mass. They gradually lose the ability to see, to swallow food, to fight off illness, and usually die within the first decade of life.
Our mission is to found and support research to cure Canavan Disease and other genetic brain diseases. We spearheaded the world's first trial of gene therapy in the brain in 1996 and demonstrated the first ever regrowth of myelin in a deteriorating disease. We have been on "Sixty Minutes" and the "CBS Morning Show," have been featured in The New York Times and TIME Magazine, and have published research results in numerous scientific journals. We are searching for a cure, and we will not stop until we find one.