On March 29, 2011, the Jewish Genetic Disease Consortium presented its COUPLES AWARE clergy training program at the Central Conference of American Rabbis (CCAR) conference in New Orleans. The program was introduced by Rabbi Deborah Bravo, of Temple Emanu-El, in Edison, New Jersey, and by Randy Yudenfriend Glaser, chair of the consortium, and a parent of two children with ML4. Orren Alperstein, President of the Canavan Foundation, who spearheaded the development of the clergy program, gave a personal plea – she and her husband lost a child with Canavan disease – for rabbis to counsel couples about the need and availability of screening and then showed moving video clips about two families who’ve struggled with two of the diseases. She introduced Chris Dvorak, a genetic counselor from Tulane Medical Center introduced to the consortium by our colleagues at Genzyme, who ably delivered the genetics portion of the training. Rabbi Peter Kasdan, the JGDC’s rabbinic advisor, led a brief discussion about how to counsel young couples about the availability and need for screening. He is available to answer any further questions: 941 387-2188 or email@example.com.
In addition to our regular training program, the rabbis in attendance heard from Rabbi Larry Sernovitz whose two and a half year old child has been diagnosed with FD (familial dysautonomia). He spoke movingly and compellingly about his experience with the testing process, as well as the need for the CCAR to move advocacy about pre-pregnancy screening to the top of its agenda. There was much discussion among the rabbis about how to accomplish this goal.
All the rabbis in attendance indicated in their follow-up surveys that they’d found the training program to be helpful. They left with the materials that have been developed: a Rabbi Learning Guide, a checklist for rabbis, and brochures for couples and congregants. Additional brochures are available from the consortium – call our hotline: 855 642-6900 or email us: firstname.lastname@example.org
If you would like the Jewish Genetic Disease Consortium to bring the COUPLES AWARE training to a local Rabbinic Association meeting in your community, or to provide an information session for your congregants or young families in your early childhood centers, we would be happy to discuss these options. You can contact us at the phone number or e-mail address above.
Please read more about COUPLES AWARE and our work with Rabbis on the “For Rabbis” section of this website.