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  • Symposium to Educate the Greater Philadelphia Community About Jewish Genetic Diseases January 12

    Published: 12/20/2013


    Einstein Healthcare Network’s Victor Center for the Prevention of Jewish Genetic Diseases, along with Har Zion Temple, Jewish Family & Children’s Service of Greater Philadelphia, and Emily’s Entourage, today announced that they will host a special symposium on Sunday, January 12, 2014 at Har Zion Temple, 1500 Hagys Ford Road, Penn Valley, PA 19072 from 10:30 am to 12:30 pm for the community to learn about and advocate for the screening of genetic diseases with a higher prevalence in the Jewish community.

    The symposium will be followed by a Screening event from 12:30 pm to 3:00 pm at Har Zion Temple for ages 18-44 to be tested for 19 specific genetic diseases. Registration for the screening can be found at www.victorcenters.org. Walk-ins are welcome too! The maximum out of pocket cost for screening is $99 with insurance being billed.

    “Fortunately, we can detect all of these diseases with one simple blood test,” said Adele Schneider, MD, Director of Clinical Genetics at Einstein Medical Center Philadelphia. “Further genetic counseling then provides young men and women who are carriers with crucial information as they begin planning to start their own families.”

    The symposium, entitled “Fitting Into Your Genes: Jewish Genetic Diseases-Data, Dilemmas and Decisions” will feature:

    Adele Schneider, MD, FACMG, Director of Clinical Genetics at Einstein Medical Center Philadelphia, Medical Director of The Victor Center for the Prevention of Jewish Genetic Diseases and Professor of Pediatrics, Jefferson Medical College;

    Emily Kramer-Golinkoff, MBE (Master’s of Bioethics), a Co-Founder of Emily's Entourage, 501(c)(3) that has raised over $515,000 to accelerate Cystic Fibrosis research in just two years.

    Pamela Grossman, OTR, MEd, an inclusion and educational consultant, and the proud mother of two grown children, one of whom has a Jewish genetic disease;

    Jill Stopfer, MS, CGC, the Senior Genetic Counselor at the Abramson Cancer Center at the University of Pennsylvania; and,

    Rebecca Carr, a ten year survivor of Stage III hereditary breast cancer who is passionate about spreading the word that “knowledge is power”.

    Approximately 1 in 4 Ashkenazi Jews is a carrier of a mutation in a gene for at least 1 of 19 specific inherited diseases that are more common in the Jewish population. While a carrier is a healthy person, a carrier may pass on a gene mutation to their offspring. If their partner is a carrier for the same gene there is the same 1 in 4 risk of bearing a child affected by that disease. Some of these diseases, such as Tay-Sachs Disease and Walker-Warburg Syndrome, can lead to the early death of a child.

    The Victor Center for the Prevention of Jewish Genetic Diseases was created in partnership with Einstein Healthcare Network and Lois Victor who lost two daughters to a Jewish genetic disease. “We would like to see these tests become as routine as a blood test for marriage,” said Lois Victor. The Victor Center, offers education, genetic counseling and screenings for Jewish genetic diseases. On a national level, Victor Center staff members work with healthcare professionals, clergy and the community to create awareness. A simple blood test is all that is needed to learn if you are a carrier. The Victor Center is located in Philadelphia with regional Victor Centers in Boston, Miami and Philadelphia and a screening program in Pittsburgh.

    Emily's Entourage is a 501(c)(3) that raises funds and awareness to accelerate the pace of Cystic Fibrosis (CF) research. Founded in honor of Emily, a young woman valiantly pursuing life full-speed despite advanced-stage CF, Emily's Entourage is about joining together and leveraging the power of community to help find a cure for Emily and the 70,000 people living with CF.

  • Communications Team