Back Kevin Doyle, William S Bermudez, Rick Retamar Front Robert Baron, Estelle Baron, Lori Baron, Lisa Doyle, Susan Retamar
More than $100,000 Raised During the Sweetness & Laughter Gala;
‘See the Light’ Award Honorees Recognized for their Leadership Over Past 20 Years
Boca Raton, FL, March 28, 2018 – 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 celebrating 20 years. Inspired by the strength of Mathew Romer, who lost his eight-year battle with Tay-Sachs disease, The Mathew Forbes Romer Foundation (MFRF) was founded in South Florida 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.
The Foundation celebrated its 20th anniversary with its annual “Sweetness & Laughter” Gala on March 10, 2018 at the Kravis Center for the Performing Arts raising over $100,000. More than 170 guests enjoyed the tribute to the MFRF accomplishments and partnerships, sumptuous food from the Breakers, a Las Vegas type show called the Illusionists and a private dessert reception. The event featured the “See the Light” Awards Ceremony, which honored leaders who have been part of the Foundation’s efforts over the past two decades.
Honorees were recognized for their leadership in three specific categories. Those in attendance, included:
Testing & Education:
- Dr. Mislen Bauer: Director of Clinical Genetics, Miami Children’s Hospital
- Richard Gold: CEO of Tenet South Florida Healthsystems Hospitals
- Lois Victor: Founder of the Victor Centers
- Rabbi Dan Levin: Senior Rabbi, Temple Beth El of Boca Raton
- Lori Baron: CEO of Baron Deliver on Demand providing logistics for testing fairs
Nursing Education Programs:
- Dr. Marlaine Smith: Dean of the Florida Atlantic University Christine E. Lynn College of Nursing
- Dr. Ora Strickland: Dean of the Florida International University College of Nursing and Health Sciences
- Ronald Assaf: Chairman of Nova Southeastern University Board of Trustees
- Monica Gettleman: NTSAD Board of Directors Family Service Lead
- Dr. Marcella Rutherford: Dean of the Ron and Kathy Assaf College of Nursing at NSU
- Dr. Rodney Howell, Director of University of Miami Department of Pediatric and Genetics
- Paula Graham: Regional Director, Genzyme Corporation
- Congressman Ron Klein: Led Bi-Partisan Florida State Initiatives for Higher Education and Biotechnology
- Dr. Randy Blakely: Executive Director, Florida Atlantic University Brain Institute
“We are thrilled with the tremendous support over the twenty years culminating with a so many special partners and friends of the foundation joining us for the celebration,” said Lisajane and Kevin Romer, Co-Founders of The Mathew Forbes Romer Foundation. “It was both a wonderful reunion and testament to how many lives we are impacting with our work.”
Honoree Rabbi Dan Levin, who helped pioneer the MFRF Testing Fairs added: “It is an important mission of the Foundation that our South Florida community get genetic testing long before they start their family planning. One day we will reach the point when genetic testing will be as natural as falling in love.”
Attendees were also treated to a video review of the accomplishments of the foundation since being launched 20 years ago. The Mathew Forbes Romer Foundation has raised over $2 million to fund projects spanning its mission with only five percent of the money raised going to administrative costs:
- Funded more than 30 nursing scholarships with Florida Atlantic University, Florida International University, and Nova Southeastern University; created nursing school training programs including simulating in-home family care.
- Hosted 20 South Florida Genetic Testing and Education Fairs; screened over 1,500 potential parents with as high as 50 percent detection. Produced the training video of the International Tay-Sachs Quality Control Laboratory.
- Conceived of and grew the National Research Initiative to 61 projects, $3.9 million in grants and many promising therapies with the National Tay-Sachs and Allied Diseases Association (NTSAD). This has led to over $20 million dollars in funding from the National Institutes of Health (NIH) and similar institutions.
- Helped establish the Tay-Sachs Gene Therapy Consortium to accelerate pre-clinical and clinical trials.
- Worked with FAU’s Brain Institute as a follow-on to the State Center for Rare and Genetic Neurological Diseases.
- Sponsored the Medical and Scientific Sessions at the annual NTSAD Family Conference.
“One of the highlights of the program was announcing that we now have a plan and are hopeful to be in clinical trials with children later this year,” added Kevin Romer. “The families that we impact and the hope they have for treatments and cures is what drives us forward year after year. It is why we started this foundation 20 years ago, in honor of our son Mathew, and it is why we will continue to persevere.”
Major sponsors include: Judy Levis Markhoff, Adolph and Rose Levis Foundation, Kathy and Ron Assaf, Baron Delivery on Demand, Counsyl, Joan and Evan Deoul, Paula Graham, Grossman Roth Yaffa Cohen, Stella and Cliff Marks, Linda & Harry Meran, Nova Southeastern University, Lisajane and Kevin Romer, Dr. Marcelle and Andrew Rosen, Karen and Eric Schiffer / Sheila, Dave and Sherry Gold Foundation, Joan and Mike Siegel, and University of Florida AEPi Fraternity.
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 20 years ago with a mission to promote and lead critical education, testing, counseling, and research initiatives that hold promise for the prevention and eventual cure of fatal children’s genetic diseases of the brain.
The MFRF is the South Florida affiliate of National Tay-Sachs and Allied Diseases Association (NTSAD), celebrating its own 60-year anniversary, and one of the oldest patient advocacy groups in the country, The president of the MFRF (Kevin Romer) is also 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 http://www.mfrfoundation.org/.