CANAVAN FOUNDATION
Canavan Foundation
The Canavan Foundation is a not-for-profit organization that was founded in 1992 by the parents and friends of children affected by the Canavan disease.
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The Goals of the Canavan Foundation
The Canavan Foundation is a 501c3 not-for-profit organization dedicated to educating at-risk populations about Canavan disease and other Jewish genetic diseases and the reproductive options available to carrier couples. We encourage carrier screening for these diseases whenever appropriate. In addition, the foundation supports research that searches for treatments and a cure for Canavan disease.
Major Programs of the Canavan Foundation
NY Metro OB/GYN Provider and Patient Education Program
Launched by the Canavan Foundation in 2012, the OB/GYN Provider and Patient Education Program provides background information and JGDC patient-education brochures on Jewish genetic diseases to over 1,000 OB/GYNs in approximately 400 practices in the five boroughs of New York City, Long Island, Westchester and Rockland Counties, Northern New Jersey and Southern Connecticut. The brochure we distribute is the only one in wide use that covers all the Jewish genetic diseases, and our program is the only one in the country that has direct, ongoing contact with the doctors. When there are updates in the field, or changes to screening recommendations, our up-to-date database enables us to share this information with doctors immediately. Over the past two years we have distributed over 40,000 brochures, and we regularly hear from the OB/GYN offices how useful this program is to them in promoting timely and complete screening.
Synagogue/Clergy Education and Outreach
In 2010, in collaboration with the Jewish Genetic Disease Consortium, we launched a program to identify and educate rabbis in the New York metropolitan area on the need to recommend Jewish genetic disease screening during premarital counseling. The program included identification of approximately 750 rabbis, who were invited to seminars throughout the region and given a Rabbi’s Guide and a supply of brochures for couples. Since 2014 we have distributed nearly 20,000 brochures in the New York metropolitan area. We recently expanded our contact list to include cantors and lay leaders, and will be mailing updated brochures to over 1,300 clergy and lay leaders. We are also in the early stages of compiling a list of clergy and lay leaders on a national basis. We believe we can identify over 5,000 Jewish leaders outside of New York who should be provided with these educational materials and urged to recommend early and complete Jewish genetic disease screening.
The Beginnings of the Canavan Foundation
The Canavan Foundation was launched in 1992, when Morgan Gelblum, daughter of Orren Alperstein and Seth Gelblum, was two years old and recently diagnosed with Canavan Disease.
Morgan was a beautiful baby, with a radiant smile, but she couldn’t hold up her head, sit unassisted, talk, or walk, and had not achieved any of the expected milestones. When she was 15 months old New York neurologist Dr. Isabelle Rapin delivered the devastating news that Morgan had Canavan disease, a degenerative disease of the white matter of the brain that would prevent her from ever having a normal life, both physically and cognitively, and lead to an early death.
Founding board members included Orren and Seth, Orren’s parents, Eileen and Arnold Alperstein (now deceased), and family members Deedy Goldstick and Pat Hirschorn, who are still on the board, which now has seven members.
Morgan Gelblum died in 1997, at the age of 7-1/2, but the Canavan Foundation works on in her memory, 22 years after its beginnings.