- Tell us about yourself and the Matthew Forbes Romer Foundation.
Lisajane and Kevin Romer received a diagnosis with Mathew, their first child, that he had a fatal genetic disease. We were in disbelief since we were both independentally tested for Tay-Sachs disease and determined to be non-carriers. With Mathew’s diagnosis, we were quickly amazed with how little existed in the way of geneticists, quality testing resources, educational programs, nursing resources, treatments, and cures in South Florida. We were determined to channel all of the energy and hope we had for curing our son, which was not possible at the time, to instead enjoying what ever time we had with our son’s short life while creating a foundation (The Mathew Forbes Romer Foundation) to help address these deficiencies.
- You recently celebrated 20 years of the foundation’s existence with a gala. Tell us about the event.
The Foundation celebrated its 20th anniversary with its annual “Sweetness & Laughter” Gala on March 10 at the Kravis Center for the Performing Arts in West Palm Beach. Each year, we use the gala as an opportunity to raise funds, highlight those leaders in the community and country that are making a difference in the world of genetic testing, nursing, research and finding a cure, and educate the attendees on the progress the Foundation is making.
This year, we raised over $100,000! More than 170 guests enjoyed the tribute to the MFRF’s accomplishments and partnerships, sumptuous food from the Breakers, a Las Vegas type show called the Illusionists and a private dessert reception. The event also featured the “See the Light” Awards Ceremony, which this year honored leaders who have been part of the Foundation’s efforts over the past two decades.
- What are some of the accomplishments the foundation has made over the past 20 years?
The Mathew Forbes Romer Foundation has raised over $2 million to fund projects spanning its mission:
- 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.
- What is the goal for the next year or 20 years?
The mission of The Mathew Forbes Romer Foundation is to lead the fight for education, quality assurance, and research of children’s genetic diseases of the brain. Education & Research of Children’s Genetic Diseases of the Brain represent our future of hope and potential.
One of the highlights of the program this year was joining with the National Tay-Sachs and Allied Diseases Association (NTSAD) in announcing that we now have a plan and are hopeful to be in clinical trials with children later this year. As I said during the event, “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.”
- What is the most rewarding part of being involved in the foundation?
There are quite a few rewarding pieces to our Foundation work:
- The partnerships that we have built with so many people and organizations in South Florida and nationally;
- Being able to honor and remember our first son Mathew;
- To be able to help so many other families with the work that we do; And
- Seeing our other two children (Alexis and Jeff) grow up to become adults and participate and sometimes lead the many events and programs of the Foundation.
Learn more at www.mfrfoundation.org.