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Center Slates Testing for Jewish Genetic Diseases
On June 2, the Victor Center for the Prevention of Jewish Genetic Diseases, at the Einstein Medical Center Montgomery, will be staging screenings — not of summer blockbusters, but of a completely other kind that may not only change your life, but also save the life of your future children and spare your household worry and heartbreak.
Debby Hirshman, national director of the Victor Center, points out that the mission of this Sunday’s event is to spread the word and get more people screened for 19 different diseases traced to Jewish genetics.
The effort is being coordinated by the new Einstein hospital in Montgomery County, the Einstein Medical Group and the center.
“One in 4 Jews is a carrier for at least one of these 19 preventable Jewish genetic diseases,” explains Hirshman. “This applies to everyone of Jewish background — even one quarter Jewish.”
She adds that “ideally, everyone should be screened in order to give themselves the greatest number of options to have healthy babies. Furthermore, since the number of tests for which people can be screened will continue to increase as new research becomes available and diseases are added to the panel, it is critical that prior to every pregnancy, people come in to take advantage of” what is offered by the Victor Center.
To carry the message to the expansive target group of the screenings, the Victor Center is in the process of forming a Philadelphia area advisory group, which will include local rabbis, Hillels, The Collaborative, Tribe 12, Chevra and other groups connected to young Jewish singles and couples.
On the national level, the Victor Center partners with a number of Jewish organizations, such as the Jewish Federations of North America and the Jewish Community Centers of North America as well as national medical associations to create awareness through conferences, marketing and social media.
The Victor Center has been instrumental in establishing rates with labs that are affordable for the screening of the full panel of tests, says Hirshman.
“We have also established a national advisory board and rabbinic board that provide strategic thought and insight. The strategy around increasing awareness is to work both bottom up and
top down. The goal is to create a broad approach that includes
the entire Jewish community — affiliated and unaffiliated, gay and straight and interfaith — with outreach that works within the structures of how each community functions.”
Hirshman adds that “the role of the Victor Center is to create a consortium of clergy, health care professionals, Jewish and non-Jewish organizations, donors and volunteers who build awareness and establish screenings in their community and help create standards of screening for all 19 diseases in the doctor’s offices. ”
The center started in 2002 from a partnership between Lois Victor and Einstein Medical Center in Philadelphia. Victor had lost two daughters to a Jewish genetic disease that could have been detected by a blood test if testing were available at the time.
As a result, she has made it her life’s work to help ensure that no other family would have to go through that anguish. She partnered with Dr. Adele Schneider, medical director of the Victor Center, as well as director, Clinical Genetics, Einstein Medical Center Philadelphia; and national medical director for the Victor Center.
As Einstein Medical Center’s mission is to protect the most vulnerable patients, and its historic roots are tied in with being a Jewish hospital, Victor and Schneider determined that it was a part of their mission and responsibility to create this awareness and screening program, not only in Philadelphia, but also on a nationwide basis.
Continues Hirshman: “The only way a person can know for certain if they are a carrier would be to have a simple blood test or by giving birth to an affected” baby.
“The great news is that medical intervention can help them have a healthy child through egg/
sperm donation or in-vitro fertilization with pre-implantation genetic diagnosis,” the genetic testing of an embryo for disease, “and prenatal diagnosis.”
In addition to the June 2 screening event in Montgomery county, Hirshman points out that screenings will also be offered once a month at the Victor Center location in Center City. Though walk-ins are welcome, she recommends making an appointment through the website (www.victorcenters.org), which often updates and provides comprehensive and itemized information.
“There are many young families living in Montgomery County, and some of them may already have a healthy child,” states Hirshman. “They may believe that other pregnancies can go the same way. The truth is, however, that if both partners are carriers for the same disease, there is a 25 percent change with each pregnancy of having an affected child.”
If both are carriers, can they have a healthy child? If they’re lucky, says Hirshman. “They should not gamble a second time.”