4th Annual Jewish Genetic Diseases Education and Screening Event
on Sunday, March 30, 2008
at the Ina Levine Jewish Community Campus
To register, visit http://www.jewishgeneticsphx.org

HISTORY OF THE JEWISH GENETIC DISEASES PROJECT:

The vast majority of American Jewish families are of Eastern European (Ashkenazic) descent and therefore, are at increased risk of a number of genetic diseases which are more prevalent among Ashkenazic Jews. Most people do not know that 1 in 25 Ashkenazic Jews is a carrier of the Tay-Sachs gene and that, if both parents of a newborn are carriers, there is a 25% chance that the baby will be afflicted with this fatal disease. Likewise, 1 in 25 Ashkenazic Jews is a carrier of the Cystic Fibrosis gene; almost 1 in 10 is a carrier of the gene for Gaucher Disease. There is a need to encourage screening of young Jewish couples who may be unaware of these diseases, their genetic character and the availability of screening tests to determine carrier status.

In September of 2002, the Council For Jews With Special Needs received a grant from the Jewish Community Foundation of Greater Phoenix to increase awareness in our community. Reaching out  to local rabbis and physicians, the Council mailed a pamphlet entitled "What You Should Know About...Jewish Genetic Diseases" that was prepared by the National Foundation for Jewish Genetic Diseases in New York City along with other educational and local resource materials. A follow-up survey several months later indicated the need to pursue additional ways to educate the Jewish community.

 The second phase of this project focused on offering educational presentations on Jewish genetic diseases, carrier rates and screening to young adults in our Jewish community.  Preparations also began to offer a daylong education and screening event. The goal was to offer affordable testing for the most prevalent genetic diseases (Tay-Sachs, Canavan, Cystic Fibrosis and Familial Dysautonomia).  A fund raising campaign yielded sufficient donations to significantly reduce the high cost of screening.

On April 3, 2005, more than 200 adults from the Phoenix area as well as from other cities and states attended the event.  A 90 minute educational panel presentation by a geneticist, a genetics counselor and a professor of Jewish studies was offered in the morning. After the presentation, 134 individuals were tested.  For $36, each person could be screened for Tay-Sachs, Canavan, Cystic Fibrosis and Familial Dysautonomia. Additional screening for Bloom Syndrome, Gaucher Disease, Fanconi Anemia, Niemann-Pick Disease and Mucolipidosis IV was available for a discounted fee.  21 of 134 participants (16%) were found to be carriers.  One individual was a carrier for two diseases. 

Similar educational screening events were held in 2006 and 2007. The full panel of nine diseases was offered for $50 per person in 2007. Again, approximately 16-18% of those who were screened were found to be carriers for one or more of the Jewish genetic diseases.

AWARDS

The Jewish Genetic Diseases Project was awarded the 2006 Belle Latchman Community Service Award from the Jewish Federation of Greater Phoenix in 2006.

THE JEWISH GENETIC DISEASES CENTER OF GREATER PHOENIX

In 2008, the project evolved into the Jewish Genetic Diseases Center of Greater Phoenix, establishing itself as an independent non-profit corporation. Annual educational and screening events will continue along with an expansion of year-round education and outreach. Visit their website for The Jewish Genetic Diseases Center of Greater Phoenix at www.jewishgeneticsphx.org to learn more about this topic and to register for the next carrier screening event.  For information, contact info@jewishgeneticsphx.org or call 480-668-3347.

Major funding for the Jewish genetic diseases program comes from The Jewish Community Foundation of Greater Phoenix, St. Joseph’s Hospital and Medical Center, and the Daron & Ron Barness Family Foundation.