CANAVAN ORGANIZATIONS
Canavan Foundation
http://www.canavanfoundation.org/
From their website:
The Canavan Foundation is a not-for-profit organization that was founded in 1992 by the parents and friends of affected children. Having witnessed the devastating effects of this disease, the founders pledged to work to increase awareness so others would not have to suffer similarly.
450 West End Avenue, #6A
New York, NY 10024
Phone: 212-873-4640
(toll free) 877-4-CANAVAN
Fax: 212-873-7892
http://www.canavanfoundation.org/
Canavan Research Foundation
From their website:
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...
(203) 746-2436 (203) 746-3205
Jacob's Cure
From their website:
Jacob's Cure is a non-profit organization founded by Jordana Holovach to save her son, Jacob, who was diagnosed with Canavan Disease at six months old... The research funded by Jacob's Cure has slowed or halted the progression of the disease in most of the children who received gene-therapy and have begun the recommended pharmacological regimen...
Post Office Box 52
Rye, New York 10580
(914) 673-2796