Screening and Prevention of Jewish Genetic Diseases Is Central Mission of The Victor Center
– Program of Einstein Medical Center Philadelphia Uses Simple Blood Test to Identify Carriers of 19 Preventable Disorders Common to Ashkenazi Jews –
PHILADELPHIA, July 11, 2011 /PRNewswire-USNewswire/ — In the past, prospective parents had no way of knowing whether they were carriers of a genetic disease that could threaten the health and life of their children – until it was too late and a child became sick. For Jewish individuals of Central and Eastern European descent, the potential danger was particularly great, since one in five Ashkenazi Jews is a carrier for at least one of 19 different genetic diseases, many of which strike in childhood and can lead to an early death.
Today, with advances in the field of genetics, scientists have identified the gene mutations that cause these inherited diseases, enabling individuals who are screened before each pregnancy to know whether their children will be at risk. Making screening widely available to potential carriers is the mission of The Victor Center for the Prevention of Jewish Genetic Diseases, an organization dedicated to preventing Jewish genetic diseases through high-quality and accessible education, screening, and counseling.
The Victor Center was founded by Lois Victor, who herself lost two children to a Jewish genetic disease and was determined to help spare other families the same heartbreak. Just as a grass-roots community campaign for Tay-Sachs disease has been successful in reducing the incidence of that disease by 90 percent through public education and screening, Ms. Victor’s goal was to advocate screening for all the Jewish genetic diseases, raising public awareness that a simple blood test could prevent a family tragedy.
In 2002, Ms. Victor established the first center at Einstein Medical Center in Philadelphia, with a second location established in 2005 at Tufts New England Medical Center Floating Hospital for Children in Boston, and a third launched in 2007 in partnership with the University of Miami Miller School of Medicine. An additional partnership offering genetic counseling, education and screening was created in Atlanta with funding from The Marcus Foundation. To date, 3,000 individuals have been screened through the Victor Centers.
“I started the Victor Center because I was looking for a way to spare others what we went through with our two daughters, one of whom died at the age of 8 and the other at 35, both from Familial Dysautonomia – a Jewish genetic disease that is preventable but that has no cure,” Ms. Victor states. “There was no genetic screening when I had my daughters; today, with one simple blood test, you can take responsibility for your life.”
Individuals of every ethnic group are potential carriers for genetic diseases, with no way of knowing since their own health is not affected. These diseases range from the more familiar Tay-Sachs disease to lesser-known diseases such as Walker-Warburg Syndrome and Nemaline Myopathy. Most have no cure and often only limited treatment, and many result in a severely limited lifespan.
Through the Victor Center and its work around the country, all at-risk individuals are now able to be screened for 19 specific diseases — and with advances in testing, that list is constantly being expanded.
According to Adele Schneider, M.D., Medical Director of the Victor Center, “Every hereditary trait in a child – from eye color to height – is influenced by the genes that are passed from parent to child. If both parents are carriers, there is a 25 percent chance with each pregnancy for a genetic disease to occur.”
A simple blood test is all that is necessary for screening for the entire Jewish genetic disease panel and individuals, including Interfaith couples, should be screened prior to each pregnancy.
The Victor Center is working to make the cost of screening more affordable. Additional information on the Victor Center and its services is available at www.victorcenters.org, or by calling 877-401-1093 or e-mailing firstname.lastname@example.org.
SOURCE The Victor Center for the Prevention of Jewish Genetic Diseases