Attendance Doubles from Previous Year’s Event
BOCA RATON, FL (March 15, 2010) – Public speaking causes anxiety for most people, but it is especially difficult when sharing stories of personal loss. Lois Victor of The Victor Center for Jewish Genetic Diseases and Kevin Romer of the Mathew Forbes Romer Foundation (MFRF) did just that in front of an audience of young people beginning the family planning process at the South Florida Jewish Genetic Diseases Educational and Screening Fair on Sunday, February 21 at Temple Beth El of Boca Raton.
“There is a special reason for this event being held here today,” said Romer, President of MFRF. “Our family is part of the Temple Beth El congregation, and we have experienced both pleasures and sadness here. We celebrated a beautiful Bar Mitzvah ceremony here with our son, Jeff, last year. Seven years ago, we memorialized our son Mathew here.”
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. In the past six years, MFRF has provided free screenings at eight fairs across South Florida for over 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.
“It is our pleasure to sponsor genetic testing and support your family planning today,” 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. “We work very hard to make it as easy as possible to receive this important genetic education and to make carrier testing affordable and accessible. The only thing we ask in return is that you pay it forward and share what you have learned today with your friends and family.”
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.
Students, engaged couples, and newlyweds of Ashkenazi Jewish ancestry between the ages of 18 and 44 were 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. In addition to presentations from Victor and Romer, participants learned from Mitch Feldman, Chief Executive Officer of West Boca Medical Center; Deborah S. Barbouth, M.D., F.A.C.M.G, Director of the Victor Program for Jewish Genetic Diseases at the University of Miami; and Rabbi Daniel Levin, Senior Rabbi of Temple Beth El of Boca Raton.
While holding his preschooler, Rabbi Levin told the audience that his biggest challenge as a parent to his daughter is convincing her to take a bath and, in the future, to do her homework.
“I cannot fathom the challenges that parents like Kevin and Lois faced with special needs children,” said Rabbi Levin. “I congratulate you who are planning to start a family by participating today. By doing this, you are giving yourself the freedom to make choices and enjoy healthy children. I thank the Romer and Victor Foundations on their joint venture to make this available to you. Together, we are participating in ‘Tikun Olam,’ which means ‘repairing that which is broken in our world.'”
After hearing about the importance and significance of genetic testing, participants were invited to receive genetic counseling and a gift of free screening, which was valued at up to $2,000.
Generous support was provided by the Adolph and Rose Levis Foundation, Judy Levis Markhoff, Temple Beth El, and West Boca Medical Center.
Friends of the March of the Living, Hadassah, Hillel of Broward and Palm Beach, Palm Beach County Board of Rabbis, Temple Beth Zion, Temple Kol Ami Emanu-El, Temple Shaarei Shalom, University of Miami Miller School of Medicine, and Rabbinical Association of Greater Miami and Broward helped promote the event to their constituents.
For more information, 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.