BOCA RATON, FL (January 22, 2010)
Kevin and Lisajane Romer and Lois Victor are South Florida parents who have lost children from Ashkenazi Jewish genetic diseases, and both families urge potential parents to get educated and screened. The families foundations, the Victor Center for Jewish Genetic Diseases and the Mathew Forbes Romer Foundation (MFRF), will sponsor the South Florida Jewish Genetic Diseases Educational and Screening Fair on Sunday, February 21 at Temple Beth El of Boca Raton from 10 a.m. to 2 p.m
Students, engaged couples, and newlyweds of Ashkenazi Jewish ancestry between the ages of 18 and 44 are invited for an educational program on genetic conditions including Tay-Sachs, Familial Dysautonomia, Bloom Syndrome, Canavan, Cystic Fibrosis, Fanconi Anemia, Gaucher, Mucolipidosis IV and Neimann-Pick.
Free carrier screening, which requires a simple blood test administered by West Boca Medical Center’s clinical staff, will be available to the first 100 participants. The test is valued at up to $2,000. Pre-registration is required for the limited spaces.
“If you are of Ashkenazi Jewish ancestry, there are two ways to find out if you are a carrier for a genetic disease,” said Lois Victor, Founder of the Victor Center for 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. “You can choose to be tested and learn your risks and options, or you can have a disabled child with a life-threatening fatal disease. There are no cures yet, but all of these diseases are preventable.”
A native of Boston, Victor is a long-time resident of Florida who lost both of her daughters to Familial Dysautonomia, a Jewish genetic disease. She has made it her mission to make sure that other children and their families need not be subjected to the heartaches of preventable diseases.
“When the Mathew Forbes Romer Foundation pioneered the South Florida Genetic Testing and Education Fair in 2003, there was an absence of education and testing services in the region,” said MFRF President Kevin Romer. “In the past six years, MFRF has provided free screenings at eight fairs across South Florida for almost 700 participants from all backgrounds. More than 20 percent of those tested were found to be carriers of the gene for at least one of these fatal diseases.”
Last year, The Victor Center joined forces with MFRF to help expand the efforts in the region.
“We are very pleased to be partnering with The Victor Center for Jewish Genetic Diseases at the University of Miami Miller School of Medicine and charter sponsor West Boca Medical Center to make it as easy as possible to receive this important genetic education and carrier testing free of charge,” said Romer.
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 over 10 years ago to support education and research of children’s genetic disease of the brain.
Additional generous support for the event is provided by Judy Levis Markhoff and the Adolph and Rose Levis Foundation. The Palm Beach County Board of Rabbis have also joined the team to help promote this important education and testing opportunity.
To register, contact Debbie Wasserman (786-897-9587, DWasserman@med.miami.edu) or visit www.mfrfoundation.org.
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 testing 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
Founded by Lois B. Victor, a mother who lost two daughters to Familial Dysautonomia, the mission of the Victor Center for Jewish Genetic Diseases is to raise awareness of Jewish genetic diseases and to provide affordable genetic counseling and screening for healthy individuals at risk of being carriers of a gene mutation for at least one of these diseases. Locations include the Victor Center for 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. For more information, visit www.victorcenters.org.