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National Gaucher Foundation Forms Alliance with the JGDC.

Published in the Houston Jewish News, November 15, 2005

JEWISH GENETIC DISEASE CONSORTIUM TO MAKE ITS DEBUT AT THE URJ BIENNIAL CONVENTION IN HOUSTON

Houston, TX, November11, 2005 – The Jewish Genetic Disease Consortium, formed in 2004 as a means by which a number of smaller, individual organizations could join together to heighten awareness of Jewish genetic diseases with a strong and united voice, will be attending the Union for Reform Judaism Biennial Conference November 16 -20 in Houston.

More than 5,000 Reform Jews, including rabbis, sisterhood members, and lay people, are expected to attend the conference, the first national educational endeavor for the Jewish Genetic Disease Consortium since it was formed. The goal of the Consortium will be to educate rabbis and other attendees about the existence of carrier screening which is now available and can ultimately prevent the birth of affected children. Many people think that Tay-Sachs disease is the only Jewish genetic disease and that it has been nearly eradicated. The fact is there are more than ten genetic disorders that occur frequently in the Ashkenazi Jewish population. Scientists today estimate that one in four Ashkenazi individuals is a carrier of a gene for a Jewish genetic condition.

Members of the Consortium have worked feverishly over the last six months to make sure that every minute counts while they are in Houston. A striking 10-foot by 10-foot booth has been developed that will, without a doubt, turn heads and stop people in their tracks. A monitor that will be situated on a pedestal within the booth will air a DVD presentation, in continuous-loop form, featuring images of affected children with information on the various Jewish genetic diseases. These images will undoubtedly bring an even deeper dimension to the message that is being imparted. In an effort to draw traffic to the booth, a cadre of Houston families who have worked with the Consortium during the last six months will distribute special buttons with the booth number and message to every person walking into the convention hall.

The booth will be manned at all times by representatives from the individual organizations, along with Dr. Adele Schneider of the Victor Center for Jewish Genetic Diseases at Albert Einstein Medical Center in Philadelphia and genetic counselors from Baylor College of Medicine. Handouts at the booth will include the Jewish Genetic Disease Consortium’s brochure with disease descriptions and website links to the individual organizations; the National Society of Genetic Counselors index card with contact information on counselors throughout the country; and for those interested in a particular disease, individual organizations’ brochures will be provided.

Finally, rabbis entering the booth will fill out a “quick questionnaire” that has been developed to provide the Consortium with insights into how it can best help rabbis to educate young couples and congregants.

In addition to educating the hundreds that go by the booth, Dr. Adele Schneider has been invited to speak to the rabbis at a “Common Grounds Luncheon.” The format of this special seminar allows for a free flowing, give and take discussion. Dr. Schneider’s presentation titled “The Power to Prevent Tragedy: Rabbinic Responsibility in Pre-marital Counseling,” will cover the following topics: What are the diseases? How are they inherited? What is involved in the screening process? And, what is currently being done to educate the Jewish community?

The seminar provided by Dr. Schneider is designed to provide knowledge so that those attending will be able to: identify the Ashkenazi Jewish Genetic diseases and their salient features; understand autosomal recessive inheritance and be able to explain it to the couples that they are counseling; understand the implications of carrier testing in the community; and recognize how the information about carrier status can affect reproductive decisions.

The Consortium has also convinced the rabbis who are developing the Stem Cell Workshop to include a geneticist on their panel discussion who will segue between stem cell research and Jewish Genetic Diseases.

The Consortium’s plan is to leave Houston having made an indelible impression upon rabbis who will, having been more fully educated, go back to their communities and spread the message of the need for carrier testing.

Dr. Schneider is available for interviews, as are several members of the Houston Jewish community who have been personally affected by Jewish genetic diseases.