South Florida-Based Organization Hosts Annual “Sweetness and Laughter” Gala & “See the Light” Awards Ceremony March 15th at the Broward Center for the Performing Arts
Boca Raton, FL, Jan. 17, 2020 – Twenty-two years after The Mathew Forbes Romer Foundation, or MFRF, was founded, the South Florida nonprofit organization dedicated to education and research into children’s genetic diseases of the brain is taking on one of its most urgent and innovative missions to date.
Boca Raton couple David and Stacey Ogman recently faced terrible news. Their 4-year-old son Jordan was diagnosed with TECPR2, a fatal genetic disease of the brain that causes rapidly progressive sleep apnea leading to death possibly within a year. Shortly after receiving the diagnosis in the fall of 2019, the Ogmans were introduced to The Mathew Forbes Romer Foundation.
The founders, Kevin and Lisajane Romer, lost their son Mathew to the genetic disease Tay-Sachs 17 years ago. They created the foundation to promote and lead critical education, testing, and research initiatives that hold promise for the prevention and eventual cure for these fatal children’s genetic diseases of the brain.
“When we met the Ogmans, it transported us back 25 years to when we received Mathew’s fatal Tay-Sachs diagnosis,” said Kevin Romer, president of MFRF. “While we had no hope for a treatment or cure, the prognosis has improved for the Ogmans and many other families who are facing the dire consequences of genetic brain diseases.”
Thanks to MFRF and its collaboration with the National Tay-Sachs & Allied Diseases Association, NTSAD, the National Research Initiative has conducted more than 15 years of research including working with the University of Massachusetts, with support from Auburn University and University of Florida. Over the past year this innovative team effort led to clinical trials, expanded access studies, and commercial licensing for Tay-Sachs, Sandhoff and GM-1 diseases.
In October of 2019, Axovant Gene Therapies, Ltd., a clinical-stage company, released data from a study of two patients with infantile Tay-Sachs. (Press release here: https://mfrfoundation.org/axovant-presents-first-evidence-of-clinical-stabilization/.)
With Jordan as a catalyst, the world renowned UF Powell Gene Therapy Center has the focus to become a Gene Therapy Center of Excellence for Neurodegenerative Diseases in Florida. “MFRF is excited to be working with the Powell Gene Therapy Center and the Ogmans to help more children with fatal genetic diseases of the brain,” said Romer. The MFRF has already announced a pledge to support this Center of Excellence.
“Progress with gene therapy for genetic diseases of the brain gives us hope for Jordan and other children with TECPR2,” said David Ogman. “Our urgent quest to find a potential treatment for Jordan led us to the University of Florida and the Powell Gene Therapy Center. The director, Dr. Barry Byrne, has set a goal to save Jordan by rapidly developing a new gene therapy, and we are tirelessly working to raise money to drive it.”
The Ogman family will be special guests at The Mathew Forbes Romer Foundation’s annual “Sweetness & Laughter” Gala taking place on Sunday, March 15, 2020 at the Broward Center for Performing Arts. The event will kick off at 11 a.m. and will include a brunch, inspirational reception, and awards ceremony as well as the hilarious “Mean Girls” Broadway Show from Tina Fey and Lorne Michaels.
Tickets are on sale now through Feb. 1 at $175 per ticket; after Feb. 1, the price will be $200. To purchase a ticket, sponsor the event or make a donation, please visit here.
At the Gala, two special leaders will be recognized during the foundation’s annual “See the Light” awards ceremony. They are:
- Barry Byrne, M.D., Ph.D., director of the UF Powell Gene Therapy Center and associate chair of pediatrics, University of Florida. Byrne has been a true pioneer of AAV Gene Therapy vectors since the 1990s and is now accelerating the center’s focus on genetic diseases of the brain. The work is also supported by several National Institutes of Health and foundation awards. Byrne serves as the chief medical adviser of the Muscular Dystrophy Association. He is an adviser to the Pfizer Rare Disease Therapeutic Area Advisory Committee and co-founder of AavantiBio.
- Oralea Marquardt, a member of the MFRF Advisory Board, who lost her child William in 2014 to GM-1 Disease. Oralea continues to play an integral part in the foundation’s nursing educational programs. In 2014, the Marquardt family was selected to participate in the foundation’s Nursing Pilot Program. Tragically, William lost his eight-year fight just days before the program’s start. William inspired his mother to get a master’s degree and become a Hospice Youth and Family Grief Counselor while also serving as the vice president of NTSAD.
Major sponsors include: Judy Levis Markhoff, Adolph and Rose Levis Foundation, Kathy and Ron Assaf, Drs. Lorrie and Lloyd Berkowitz, Joan and Evan Deoul, Stella and Cliff Marks, Linda & Harry Meran, Lisajane and Kevin Romer, Dr. Marcelle and Andrew Rosen, Karen and Eric Schiffer / Sheila, Dave and Sherry Gold Foundation, Joan and Michael Siegel
The MFRF, which is also the Florida affiliate of the NTSAD, has raised over $2.2 million itself to fund projects spanning its mission and vision across three pillars: Research of Treatments and Cures, Education and Genetic Screening, and care through Nursing School Educational programs.
- Research: Conceptualized and grew the National Research Initiative with NTSAD to 64 projects, and over $4 million in grants leading to many promising therapies. This has generated over $20 million in funding from the NIH and similar institutions. The MFRF also helped establish the Tay-Sachs Gene Therapy Consortium to accelerate pre-clinical and clinical trials and sponsors the Medical and Scientific Sessions at the annual NTSAD Family Conference.
- Screening: Hosted 22 South Florida Genetic Testing and Education Fairs with JScreen and Victor Center; screened over 1,600 potential parents, achieving up to 50% detection. Produced the training video for the International Tay-Sachs Quality Control Laboratory.
- Nursing: Funded more than 40 nursing scholarships with Florida Atlantic University, Florida International University, and Nova Southeastern University; created nursing school training programs including simulations demonstrating in-home family care.
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, or MFRF, was founded in South Florida 22 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.
The MFRF is the South Florida affiliate of National Tay-Sachs and Allied Diseases Association, celebrating its own 60-year anniversary. It is 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 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 https://mfrfoundation.org/.