South Florida Genetic Screening and Education Fair; Foundation Gala and Awards Banquet;
and Special Movie Screening All Took Place in Boca Raton in Late February

Boca Raton, FL, March 16, 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, hosted a full day of “Celebration of Screening” activities on Sunday, February 22, 2015. The day began with a Genetic Screening and Education Event at B’nai Torah Congregation in Boca Raton, which featured an educational session 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.

Following the session dubbed Are there Jewish Genes?, on-site genetic screening and at-home kits for more than 80 diseases were offered. More than 30 individuals from South Florida participated in the on-site testing managed by the Victor Center, while many more signed up to participate remotely or in follow-on fairs. For those who were unable to attend the Fair (or who do not live in Florida), an at-home screening kit is available from Jscreen at: http://jscreen.org/reg/

“People need to be aware of fatal genetic diseases and the availability of tests like we are offering today,” said Kevin Romer, President of The Mathew Forbes Romer Foundation, during the panel. ”We need to fill seats, we need to get the word out, and we need to get more individuals tested. That’s our mission and the mission of our partners.”

Later that evening, The Mathew Forbes Romer Foundation hosted its 16th anniversary of “An Evening of Sweetness & Laughter,” which included a private movie screening of the 40th Anniversary of Monty Python and the Holy Grail, a sumptuous dinner and dessert reception, and the “See the Light” Awards Ceremony. Thanks to the support of more than 170 attendees, the Foundation grossed $85,000, which will directly fund the education and research of children’s genetic diseases of the brain.

The Foundation was pleased to feature Bernie Marcus, co-founder of Home Depot and Chairman of the Marcus Foundation, as the honorary chairman of the Foundation’s “Celebration of Screening.” Mr. Marcus shared a video testimonial about his commitment to supporting the genetic screening mission.

“When we built the Home Depot, we knew getting the price down was the critical factor, while having the quality of the merchandise,” said Mr. Marcus. “So here we are talking about the same thing. We are talking about quality testing, so you can be assured that the tests are going to be accurate. And quality counseling afterwards, where people work with you one on one to help you make the decisions you have to make.”

The Foundation also honored two pioneers of genetic screening during the “See the Light” Awards ceremony.

  • 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 two-million people have been carrier screened; and as a result, the incidence of this tragic condition has been reduced by more than 90 percent in the highest risk populations
  • Lori Baron, CEO of Baron Delivery on Demand/Messenger Service, helped pioneer The Mathew Forbes Romer Foundation’s South Florida Screening and Education Fairs over 10 years ago by handling medical logistics. Baron is also a member of the Foundation’s Advisory Board.

Major sponsors include the Adolph & Rose Levis Foundation, Judy Levis Markhoff, AllianceBernstein, Joan and Evan Deoul, Dr. Marcelle and Andrew Rosen, Stella and Cliff Marks, Joan and Mike Siegel,  Baron Delivery on Demand, Miami Children’s Hospital, Grossman Roth P.A., Tyco Security Products, Sheila Gold Foundation, Bettina and Pablo Meles, and Lisajane and Kevin Romer.

To view the video package from the Foundation’s “See the Light” Awards ceremony, please click here.

Photos from the events are available for download here:

 

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 following successful results with mice, cats, and sheep;
  • 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.

Media Contact:
Melissa Perlman
BlueIvy Communications
561-310-9921
melissa@blueivycommunications.com