South Florida Genetic Screening and Education Fair, New At-Home Screening Option,
Gala and Awards Banquet, and Movie Screening will Take Place February 22, 2015
Boca Raton, FL, January 14, 2015: The Mathew Forbes Romer Foundation (MFRF), a non-profit organization dedicated to the education and research of children’s genetic diseases of the brain, is hosting a full day of “Celebration of Screening” activities on Sunday, February 22, 2015. The day will kick-off at 9:30am with a Genetic Screening and Education Event featuring an educational session dubbed “Are there Jewish Genes?” with leaders from the Victor Center for the Prevention of Jewish Genetic Diseases, JScreen, The Mathew Forbes Romer Foundation, Miami Children’s Hospital and Emory University. On-site counseling and screening will follow at 11:30am. All morning activities will take place at B’nai Torah Congregation, 6261 SW 18th Street, Boca Raton, Florida.
- Pre-register for the screening fair at: https://www.victorcenters.org/index.cfm/screenings/bnai-torah-congregation-screening-boca-raton-fl/;
- New this year: For those unable to attend the fair (or who do not live in Florida), an at-home screening kit is available at: http://jscreen.org/reg/.
Later that evening, the “Celebration of Screening” will culminate with The Mathew Forbes Romer Foundation’s 16th anniversary of “An Evening of Sweetness & Laughter.” The night will feature a private movie screening of the 40th Anniversary of Monty Python and the Holy Grail – the funniest movie of all time, a sumptuous dinner and dessert reception, and the “See the Light” Awards Ceremony. Evening activities will take place at the Cinemark Palace Theater and Bogart’s Restaurant in Boca Raton, beginning at 5:00pm. Tickets and sponsorship opportunities are available at http://www.mfrfoundation.org/help_details.php?event=48. Charter sponsors include the Adolph & Rose Levis Jewish Community Center, Judy Levis Markhoff, Andrew and Dr. Marcelle Rosen, AllianceBernstein, and Baron Delivery on Demand.
During the See the Light Awards Ceremony, the Foundation will honor two pioneers of genetic screening:
- Dr. Michael Kaback, medical geneticist and past Chairman of Pediatrics and Professor Emeritus at the University of California San Diego School of Medicine, conceived of and pioneered the first regional, national, and then international programs for the prevention of Tay-Sachs disease. Since his pilot efforts in the Baltimore-Washington D.C. area in 1971, over 2-million people have been carrier screened; as a result, the incidence of this tragic condition has been reduced by more than 90% in the highest risk populations
- Lori Baron, CEO of Baron Delivery on Demand/Messenger Service, helped pioneer the MFRF South Florida Screening and Education Fairs over 10 years ago by handling medical logistics, joining the Foundation’s Advisory Board, and providing critical funding.
“This is our most ambitious Celebration of our Mission to date and for great reasons,” said Kevin Romer, president of The Mathew Forbes Romer Foundation. “Screening has always been one of our Foundation’s top priorities and we are proud to celebrate the unprecedented reach, economics, and ease of testing while having another fun and inspirational gala with our special community.”
About The Mathew Forbes Romer Foundation
Inspired by the strength of Mathew Romer, who lost his eight-year battle with Tay-Sachs disease in 2003, The Mathew Forbes Romer Foundation (MFRF) was founded in South Florida 16 years ago with a mission to promote and lead critical awareness, testing, counseling, and research initiatives that hold promise for the prevention and eventual cure of fatal children’s genetic diseases of the brain.
Since being launched, the Foundation has:
- Co-Founded the National Research Initiative with the National Tay-Sachs and Allied Diseases Association in 2002; raised $3M in grants, which has resulted in 42 research projects;
- Funded several projects that have led to large National Institutes of Health (NIH) grants resulting in over $10 million towards goal;
- Helped establish the Tay-Sachs Gene Therapy Consortium with a plan to get to clinical trials in 2013 following successful results with mice, cats, and sheep; Unprecedented critical findings around dosage safety being addressed before review with Food & Drug Administration (FDA);
- Hosted countless genetic testing and education fairs since 2003 around South Florida and reached more than 1,000 people through screening efforts;
- Created and grew pediatric nursing scholarships across five colleges and universities and created an in-home community based nursing school educational program in partnership with the Florida International University and Florida Atlantic University Colleges of Nursing.
The MFRF is the South Florida affiliate of National Tay-Sachs and Allied Diseases Association (NTSAD), one of the oldest patient advocacy groups in the country, and a member of the Jewish Genetic Disease Consortium. The President of the MFRF (Kevin Romer) is also the immediate Past President of NTSAD. The Mathew Forbes Romer Foundation was recognized in 2014 with the Best of Boca Raton Award – Education & Research Foundation. For more information, visit www.mfrfoundation.org.