Drs. Deborah Barbouth and Miguel Sena-Esteves Honored with the “See the Light” Award
BOCA RATON, FL (January 14, 2011) – The Mathew Forbes Romer Foundation (MFRF) and 166 special guests enjoyed “An Evening of Sweetness & Laughter” featuring the “Laffing Matterz” dinner show on Sunday, January 9, 2011 at The Broward Center for the Performing Arts. Generous sponsors and guests raised more than $45,000 toward the Foundation’s mission.
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 diseases of the brain.
The annual “See the Light” Awards were a highlight of the evening. Awardees included Deborah Barbouth, M.D, and Miguel-Sena Esteves, Ph.D. Dr. Barbouth is Medical Director for Genetics at the University of Miami Miller School of Medicine and the Victor Center. Dr. Sena-Esteves is the team leader for the International Tay-Sachs Gene Therapy Research Consortium. Both were honored for their outstanding contributions in pioneering and delivering genetic testing and education programs and moving research forward to eventually find a cure.
Guests were moved by a stirring video presentation starting with children and families who motivate the Foundation’s work and continuing with the progress being made with programs in education, genetic testing, and research, including an international research consortium rapidly approaching clinical trials.
“Our ‘Sweetness and Laughter’ theme symbolizes both how sweet these children are and how laughter is an important way of coping with the devastating impact of these diseases,” said Kevin Romer, MFRF president and Mathew’s father.
Major sponsors included the Adolph & Rose Levis Foundation, Judy Levis & Paul Markhoff, Lois & Herm Siegel, Karen & Eric Schiffer/Sheila Gold Foundation, Carole Romer, Marcelle & Andrew Rosen, Baron Delivery on Demand, Florida Atlantic University, Bettina and Pablo Meles, Linda and Harry Meran, Lillian Raen, Joan and Mike Siegel, Tyco Security Products, the University of Miami Miller School of Medicine Hussman Institute for Human Genomics, West Boca Medical Center, and Jennifer and Edward Yorke.
Over $1.3 million has been raised throughout the Foundation’s short history. Projects funded include:
- Approaching 1,000 people who have been reached through eight genetic testing and education fairs at ten locations throughout South Florida
- The National Tay-Sachs & Allied Diseases Association National Research Initiative
- The Tay-Sachs Gene Therapy Consortium research
- A variety of education and outreach programs with the University of Miami
- The State Center for Rare and Genetic Neurological Disease research
- Over 15 pediatric and genetic nursing scholarships
- Neurogenetic patient registry through the Miami Children’s Hospital Brain Institute
- National Jewish Genetic Disease Consortium education efforts
- The International Tay-Sachs Quality Assurance Laboratory training video and manual
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 screening fairs in South Florida in 2003, MFRF co-founded the NTSAD National Research Initiative in 2002. For more information, visit www.mfrfoundation.org.