Award Winners Include Mr. Ron Assaf and Dr. Gustavo Maegaway for their
Commitment to Advancing the Foundation and its Research Goals
Boca Raton, FL, January 4, 2016: 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 its 17th annual “An Evening of Sweetness & Laughter” on Sunday, February 28 from 5:30 to 9:30 pm. The night will feature an awards ceremony highlighting Mr. Ron Assaf and Dr. Gustavo Maegawa, a review of the Foundation’s accomplishments, and a performance by comedian Johnny Lampert, a regular at New York City and Los Angeles’ best comedy clubs.
The event will take place at the newly remodeled Grand Ballroom at the Seagate Country Club in Delray Beach. Tickets ($150 early bird before February 6, 2016; $175 regular) and sponsorship opportunities are available here.
During the See the Light Awards Ceremony, the Foundation will honor two individuals:
- Mr. Ron Assaf, founder of Sensormatic Electronics, one of the Foundation’s first major benefactors, and Chairman of the Board/President of several institutions that the Foundation has partnered with, including Nova Southeastern University, Boca Regional Hospital, and Florida Atlantic University Foundation.
- Dr. Gustavo Maegawa, who directs a Lysosomal Storage Disease Program at the University of Florida. He has transferred from Johns Hopkins to UF College of Medicine Department of Medicine Department of Pediatrics, Division of Genetics. Dr. Maegawa also conducts basic research in his laboratory aiming to understand molecular mechanisms of LSD and develop new therapeutic approaches.
“Last year was all about screening and we were successful having reached over 1,000 potential parents in South Florida since 2002 with 20% detection” said Kevin Romer, president of The Mathew Forbes Romer Foundation. “However, this year will focus on breakthroughs in treatment, prevention and caring.”
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 17 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;
- Funded more than 25 nursing scholarships with four academic institutions in South Florida, including Florida International University, Florida Atlantic University Colleges of Nursing, and Nova Southeastern University.
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.