South Florida Hospital News
Thursday August 6, 2020

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March 2008 - Volume 4 - Issue 9


Lois Victor: A Guiding Light for Genetic Testing Availability

Lois Victor, the Founder of the Victor Center for Jewish Genetic Diseases, was recently honored by the Mathew Forbes Romer Foundation for her work in genetic disease education and testing. She received the See the Light award at their annual Sweetness and Light event held January 12, 2008 at the Broward Performing Arts Center.

The Victor Center promotes the awareness, education and prevention of Ashkenazi Jewish genetic diseases. Forty-five percent of the world-wide Ashkenazi Jewish population lives in the United States, and one in five is a carrier for at least one of the 11 identified Jewish genetic diseases. Many of these diseases are fatal within the first few years of life. All of these diseases create incredible hardship for the affected children and their families. This heartache can be avoided with one simple blood test.

Victor's motivation to found the center at the Albert Einstein Medical Center in Philadelphia was from her own personal experience with the genetic disease, Familial Dysautonomia. "My daughter Debbie died when she was eight years old and my daughter Linda at the age of 35. I was looking for a way to spare others what my family and I went through for 38 years. I was most fortunate to meet Dr. Adele Schneider, a geneticist from Albert Einstein. After speaking with her for some time, I knew that we shared the same vision," said Victor.

Dr. Adele Schneider, Director of Clinical Genetics at Albert Einstein Healthcare Network and advisor for the Victor Center, focuses on community screenings on college campuses, and large scale collaborations such as the recent screening held at the United Jewish Communities (UJC) annual convention in Nashville. At the end of the Conference of more than 3,000 Jewish community leaders, the UJC board passed a resolution calling for national support of Jewish genetic disease education and screening and cited the Victor Center's leadership in this area.

The Victor Center has established partnerships with the Tufts-New England Medical Center Floating Hospital for Children in Boston, and most recently with the University of Miami Miller School of Medicine.

With over 600,000 Jews living in the South Florida area, launching the University of Miami program was of primary importance for 2007. "We are proud that the University of Miami has agreed to be the home of the Victor Center in this region, and look forward to a very successful collaboration," said Victor.

One of the challenges Jewish couples face in obtaining the costly, but necessary testing is a lack of insurance coverage. Many insurance carriers do not yet cover pre-conception testing. Victor acknowledges that numerous partners, like the Mathew Forbes Romer Foundation, are needed to achieve the goal of screening all young adults of Ashkenazi Jewish ancestry. She believes this kind of collaborative effort will help make testing more available in the future.

One of the center's goals is to educate physicians and the insurance industry so testing and counseling become standards of pre-conception care and are made available to all while maintaining safeguards of confidentiality.

"My vision for the future of the Victor Center is to become the gold standard for uniformity, affordability and sustainability of testing, none of which are standard now; that all Jews of child-bearing age be tested as a matter of course; that rabbis require testing before marriage; and that physicians promote that testing," said Victor.

In 2008, the Victor Centers’ educational efforts will be ongoing. In March, the Victor Center is hosting a Jewish Genetic Disease symposium in Philadelphia in partnership with many community organizations that have complimentary missions. In addition, there will be a presentation about Jewish genetic diseases at the upcoming UJC Young Leadership Convention in Washington, D.C., furthering the Victor Center's work in engaging the Jewish leaders of tomorrow.

"Now that we have the knowledge and technology to prevent Jewish genetic diseases, it is our collective responsibility to make sure that Jewish babies are born healthy. We can make this happen," said Victor.

For more information about the Victor Programs, contact Dr. Deborah Barbouth at the Victor Center, UM at (786) 897-9587 or Dr. Adele Schneider at Victor Center, AEHN at
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