Symposium stresses urgency of genetic screening for Jews
By SALLY FRIEDMAN For the Voice
They gathered to consider one of the most urgent issues facing Jews, an issue too little known, understood and examined.

Gathered at the City Ave. Hilton for a symposium concerning Jewish genetic diseases are (from left), Joel Kaber; Jewish Federation of Southern NJ executive; Jack Dembow, executive director, Jewish Family & Children's Service of Greater Philadelphia; Dory Zatuchni, executive director of Jewish Family Services of Delaware; Jennifer Weiss, executive director, Jewish Family & Children's Service of Southern NJ; Dr. Adele Schneider, director of Clinical Genetics at Albert Einstein Medical Center and Rabbi Jeffrey Arnowitz, president, South Jersey Tri-County Board of Rabbis.

Several hundred men and women- social workers, physicians and other health care professionals, along with families who have been affected- came together recently at the Hilton on City Ave. in Philadelphia to discuss "Healthy Generations: Mobilizing Our Community to Prevent Jewish Genetic Diseases."

The event, a joint project of Samost Jewish Family and Children's Service of Southern New Jersey, partnered with the Albert Einstein Healthcare Network's Victor Center for Jewish Genetic Diseases, JFCS of Greater Philadelphia and JFS of Delaware, included seminars on screening through a simple blood test, relevant Jewish ethical issues, public health policies, advocacy, and how families cope.

A large contingent from South Jersey attending the symposium was comprised of 11 board members and staff from JFCS, including agency executive Jennifer Weiss. JFCS staffers Sherry Wolkoff, Beth Wynne, Marsha Becker and Rena Essrog helped plan the event, plus Joel Kaber, CEO of the Jewish Federation of Southern New Jersey.

The statistics, the audience learned, are sobering. Approximately one in four Jewish men and women of Eastern European descent are carriers of a gene mutation for a cluster of inherited diseases in the Jewish population. While carriers are healthy, their offspring are at risk of bearing a child with a disease like Tay Sachs and Canavan Disease. The growing rate of intermarriage, and immigrant movement, means that the problem is no longer just one for Ashkenazi Jews.

If two partners are carriers of a gene mutation for the same disease, each pregnancy brings a one in four chance of having an affected child.

"This is a very human issue, involving young people and married couples," said Rabbi Jeffrey Arnowitz, associate rabbi at Cong. Beth El and President of South Jersey's Tri- County Board of Rabbis. "College kids also need to be tested through Jewish agencies like Hillel, and couples need to be aware of genetic screening," said the rabbi, noting that his own consciousness has been raised and he is actively counseling young people about screening.

"The silence is deafening, and we must raise awareness," said Arnowitz. That sentiment was echoed throughout the day as participants in "Healthy Generations" learned more about pending legislation concerning privacy and insurance issues, the availability of screenings and the barriers that keep many from seeking screening.

"When in doubt, screen!" was the resounding message of the health professionals, such as Adele Schneider, director of the Clinical Genetics program at Albert Einstein's Victor Center for Jewish Genetic Diseases, who addressed the audience.

Dale Mintz, Founding National Director of Women's Health and Advocacy for Hadassah, urged self-advocacy, including the basics like knowing one's own medical history and family history. "Ask for 10 more minutes with your doctor to discuss genetic issues - so much depends on being armed with knowledge."

Some of the most powerful testimony at the conference came from family members profoundly affected by Jewish genetic diseases of a loved one.

There was a kind of "Neverland" that the celebrated film's producer, Richard Gladstein, entered when his son Milo was born seven years ago. Gladstein, who has had a long and luminous career as a Hollywood film producer, with movies like "Pulp Fiction" "Cider House Rules" and "The Bourne Identity" to his credit, could not have predicted the crisis that would follow his son's birth with a disease called Bloom's Syndrome

Despite that dire news, Richard Gladstein reported that "Milo is a wonderful little boy who's brilliant and a joy, but he still has a horrible disorder… and anyone who doesn't pursue the genetic testing that is available today is truly crazy."

For information about screening for Jewish genetic diseases, please phone JFSC at 424-1333 and the Victor Center at Albert Einstein,(215) 456-8722. Couples of childbearing age are strongly urged to seek testing.