About the Foundation
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 genetic diseases and the reproductive options available to carrier couples. We encourage preconception genetic carrier screening whenever appropriate. In addition, the foundation supports research towards treatments and a cure for Canavan disease.
Major Programs of the Canavan Foundation
Provider and Patient Education Program
Launched by the Canavan Foundation in 2012, the Provider and Patient Education Program provides background information and JGDC patient-education brochures on genetic diseases to to hundreds of Ob-Gyns, primary care providers, fertility clinics and genetic counselors around the country. The brochure we distribute is the only one in wide use 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 ten years we have distributed nearly 100,000 brochures to practices around the country, and we regularly hear from the medical 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 and the New York Board of Rabbis, we launched a program to educate rabbis and other community leaders in the New York metropolitan area on the need to recommend genetic disease screening during premarital counseling. The program reached approximately 750 rabbis, who were invited to seminars throughout the region and given a Rabbi’s Guide and a supply of brochures for couples. Article about this program here. In 2012 we expanded his program nationally, building a database of nearly 4,000 clergy and lay leaders at more than 1,500 synagogues and other organizations. We reach out to all the synagogues in our database in the spring and summer to make sure they are stocked with brochures for the High Holy Days. Since the inception of this program we have distributed nearly 100,000 brochures to synagogues. In response to the Covid shutdown we developed a digital version of the brochure and a three-minute educational video for synagogues to share with their members.
Direct Outreach through Social Media
In late 2021 we started outreach through Facebook, directly targeting parents-to-be around the country, using 15-second teaser for our three-minute video. This Facebook campaign has already been seen by nearly 500,000 prospective parents in its first six months.
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 (now deceased), 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 seven and half, but the Canavan Foundation works on in her memory, 30 years after its beginnings.
To read more about Morgan Gelblum and the beginnings of the Canavan Foundation, click here.
Newsletters
The Canavan Foundation publishes an annual end-of-year newsletter. To see a list and download a newsletter in PDF form, please click here.
Support the Foundation
Your tax-deductible contributions help fund education, outreach and research projects important to our mission. Learn more about supporting our work.
Canavan Foundation Timeline
- 1992 Canavan Foundation incorporated with a dual mission: to support research leading to carrier and prenatal tests, and educate and screen at-risk population.
- 1993 CF awards 4 grants for gene research, produces first educational brochure.
- 1994 CF sponsors first-ever international Canavan Disease symposium.
- 1996 CF-supported screening day held at Mt.Sinai Medical Center.
- 1997 CF and National Tay-Sachs and Allied Diseases Association persuade American College of Obstetrics and Gynecology to establish carrier screening as a standard of care of Ashkenazi Jewish couples.
- 2000 CF joins lawsuit against Miami Children’s Hospital to assure wide availability and affordability of Canavan screening.
- 2002 CF forms Rabbinic Advisory Committee.
- 2005 CF joins with four other Jewish genetic disease organizations to form the Jewish Genetic Disease Consortium (JGDC); CF initiates Grand Rounds seminars in hospitals.
- 2009 CF underwrites first-ever national online survey to understand genetic screening knowledge and practice among the American Jewish population.
- 2010 CF joins with JGDC to launch COUPLES AWARE, a program to provide training and resources for rabbis to use in premarital counseling.
- 2011 CF works with JGDC to redesign educational brochure on Jewish genetic diseases, including both Ashkenazi and Sephardic concerns.
- 2012 CF underwrites program to visit every OG/GYN practice in the NY metropolitan area to provide information to the doctors about genetic carrier screening and supply free patient-education brochures.
- 2014 CF expands Ob-Gyn outreach nationally, distributing brochures and other information to more than 500 practices on a regular basis.
- 2015 CF develops a database of more than 3,500 clergy and community leaders at more than1,500 synagogues and organizations around the country, begins campaign to distribute brochures before the High Holy Days annually.
- 2018 CF expands outreach to primary care providers and genetic counselors, distributing brochures, posters and other information.
- 2019 CF begins work with Aspa Therapeutics to promote CAN-Inform, a national history study of Canavan disease, enrolling families affected by the disease.
- 2020 In partnership with the Jewish Genetic Disease Consortium (JGDC), CF develops “Building Healthy Families” campaign, featuring a 3-minute video stressing the need for preconception genetic carrier screening for all prospective parents.
- 2021 CF begins a groundbreaking social marketing campaign on Facebook to reach parents looking to start or add to a family. Aspa Therapeutics receives approval for clinical trial of experimental gene replacement therapy; first doses administered through their CAN-Aspire program.
- 2023. Canavan Foundation, in coordination with the Jewish Genetic Disease Consortium, revised the basic educational brochure to stress the importance of preconception screening for all prospective parents; distributes thousands of brochures to Ob/Gyns, primary care physicians, genetic counselors and synagogues.
