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.

The Foundation’s mission is to help prevent Canavan disease through education and testing and to support research efforts, which have yet to find an effective therapy.

In 1994, the Foundation sponsored an international Canavan Disease Symposium of leading researchers at what was then the Columbia-Presbyterian Medical Center.

A number of those experts serve on the Foundation’s scientific/medical advisory committee.

The Canavan Foundation’s board of directors is dedicated to increasing public awareness and understanding of the genetic risks of the disease. Outreach is critical to at-risk populations, such as Ashkenazi Jews, as well as to the medical community, which still remains largely unaware of the disorder. Please provide us with your e-mail address so we can keep you updated about new developments.

This Foundation needs donations to support this website and other public education materials and efforts; but more importantly, the Foundation needs your help to spread the word to those who are potentially at risk.

Contact us about contacting your local synagogues, Jewish organizations, friends and the media about increasing awareness and encouraging screening and research.

Remember, until a treatment is developed or a cure is found, prevention is the most effective means of dealing with Canavan disease.