Back to news index
South Florida Jewish Genetic Diseases Educational and Screening Fair Providing Valuable Screening on May 1
BOCA RATON, FL (March 14, 2011) – The Victor Center for the Prevention of Jewish Genetic Diseases and the Mathew Forbes Romer Foundation (MFRF), will sponsor the third South Florida Jewish Genetic Diseases Educational and Screening Fair on Sunday, May 1, 2011 at the B’nai Torah Congregation (6261 Southwest 18th Street in Boca Raton) from 10 a.m. to 2 p.m.
Kevin and Lisajane Romer and Lois Victor are South Florida parents who have lost children from Ashkenazi Jewish genetic diseases. Their children inspired them to create the Mathew Forbes Romer Foundation and Victor Center, respectively, and to sponsor and host regular education and screening fairs.
Both families urge potential parents to get educated and screened. Students, engaged couples, and newlyweds of Ashkenazi Jewish ancestry between the ages of 18 and 45 are invited to participate in a carrier screening for genetic conditions as well as a highly interactive educational program delivered by Deborah Barbouth, M.D, F.A.A.P., F.A.C.M.G., Assistant Professor at the University at the Miami School of Medicine and Medical Director of the Victor Center. Eighteen tests will be provided, including Tay-Sachs, Familial Dysautonomia, Bloom Syndrome, Canavan, Cystic Fibrosis, Fanconi Anemia, Gaucher, Mucolipidosis IV and Neimann-Pick. The carrier screening requires a simple blood test, that will be drawn by phlebotomists from West Boca Medical Center/ Tenet South Florida and pre-registration is required.
To register, visit www.victorcenters.org/screenings or www.mfrfoundation.org and select the May 1, 2011 South Florida event link. The final date to register is April 20, 2011. Philanthropic financial assistance is available for the uninsured or underinsured. For questions, contact Debbie Wasserman (786-897-9587or DWasserman@med.miami.edu).
In 2009, The Victor Center collaborated with MFRF to help expand education and screening efforts in South Florida. The two organizations have provided thousands of tests in the region. More than 20 percent of those tested were found to be carriers of the gene for at least one of these devastating diseases.
Additional supporters of the May 1 event include West Boca Medical Center, Judy Levis Markhoff and the Adolph and Rose Levis Foundation, B’nai Torah Congregation and Temple Beth El of Boca Raton.
Inspired by the strength of Mathew Romer, who lost his eight-year battle with Tay-Sachs disease in 2003, MFRF was founded in South Florida 12 years ago to support education and research of children’s genetic disease of the brain. In memory of Mathew’s passing in 2003, MFRF pioneered the South Florida Genetic Testing and Education Fair.
Lois Victor is the Founder of the Victor Center for the Prevention of Jewish Genetic Diseases at the Albert Einstein Medical Center in Philadelphia, the Victor Outreach Program at Tufts-New England Medical Center in Boston, and the Victor Center at The University of Miami Miller School of Medicine. A native of Boston, Victor is a long-time resident of Florida who lost both of her daughters to a Jewish genetic disease. She has made it her mission to make sure that other children and their families not be subjected to the heartaches of preventable diseases.
About the Mathew Forbes Romer Foundation
The Mathew Forbes Romer Foundation (MFRF), established in 1998, is a non-profit organization that drives education and research of children's genetics diseases of the brain. In 2008, the Foundation celebrated its 10th anniversary. MFRF is the South Florida affiliate of National Tay-Sachs and Allied Diseases Association (NTSAD) and a member of the Jewish Genetic Disease Consortium. In addition to pioneering genetic education and screening fairs in South Florida in 2003, MFRF co-founded the NTSAD National Research Initiative in 2002. For more information, visit www.mfrfoundation.org.
About the Victor Centers for Jewish Genetic Diseases
The mission of the Victor Center for the Prevention of Jewish Genetic Diseases (www.victorcenters.org) is to ensure that babies are born free of life-threatening and preventable Jewish genetic diseases. For the past decade, the Victor Center has educated and implemented awareness and education programs for the prevention of Jewish genetic diseases and organized college campus and community-based affordable and accessible genetic counseling and screenings.
The Victor Center partners with Jewish communal organizations, Hillels, Rabbis of all denominations and medical organizations to form coalitions to collectively launch awareness campaigns and ensure ongoing access to comprehensive Jewish genetic disease education, counseling services and screenings. There are Victor Partnerships Atlanta, Pittsburgh and Minneapolis. Victor Centers are located in Boston, Miami and Philadelphia and are serving those communities as well.