The Capitol Steps will Humor the Crowd During a Matinee Show;
See the Light Award Winners Include: A Heroic Mom and Champion of Family Support
and the Pioneers of FAU’s Brain Institute and the Jupiter Life Science Initiative
Boca Raton, FL, January 17, 2017: 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 19th annual “Sweetness & Laughter” Gala on Sunday, March 5, 2017 at 11:30am. The event will feature the “See the Light” Awards ceremony highlighting the work of important leaders; a review and celebration of the Foundation’s accomplishments; a sumptuous brunch and desserts from the Breakers; and a matinee show performance by The Capitol Steps.
The event will take place at the Kravis Center for the Performing Arts at 701 Okeechobee Blvd in West Palm Beach, Florida. Tickets ($150 extra sweet pricing through January 22, 2017; $175 regular ticket price) and sponsorship opportunities are still available here.
During the See the Light Awards Ceremony, the Foundation will honor several individuals:
- Monica Gettleman, Vice President of Family Services, National Tay-Sachs and Allied Diseases.
- Randy Blakely, Ph.D., Florida Atlantic University’s Brain Institute & Professor in FAU’s Charles E. Schmidt College of Medicine
- Dr. Rod Murphey, Director of FAU’s Jupiter Life Science Initiative and Chair & Professor in FAU’s Department of Biological Sciences.
“We are truly privileged to honor this year’s ‘See the Light’ Awards winners for their outstanding contributions to the community,” said Kevin Romer, president of The Mathew Forbes Romer Foundation. “Monica lost her daughter, Brooke, to Tay-Sachs disease the same year that the Mathew Forbes Romer Foundation was founded. Since then Monica has worked tirelessly on a national level to create and lead family services programs for other affected families. In parallel, we are also recognizing joint leaders, Drs. Blakely and Murphey, who have helped pioneer the FAU Brain institute and the world class Jupiter Neurosciences Campus in partnership with Scripps Research Institute and Max Planck.”
As always, the “Sweetness & Laughter” Gala symbolizes how laughter is an important way of coping with the devastation impact of fatal genetic diseases on children and their families. And “The Capitol Steps” are sure to tickle attendees’ funny bones with their clever and creative humor targeting today’s hot political topics and personalities. Since their beginning in 1981, The Capitol Steps have performed shows and have recorded over 30 albums, including their latest, “What to Expect, When You’re Electing.” They have been featured on NBC, CBS, ABC, PBS and in cities around the country.
Specific achievements in 2016 have included:
- Expanded foundation’s relationship with the Nova Southeastern University which features a nursing student scholarship program, lecture series on genetics, clinical pilot program with nursing student and affected child/family, and genetic testing and education events.
- Continue to develop partnership with Florida Atlantic University including the creation and implementation of a simulated family-centered learning experience that will prepare FAU student nurses to care for children with Tay-Sachs and other neurodegenerative diseases.
- Pre-clinical trials with Gene Therapy for Tay-Sachs have progressed without any adverse or toxic effects, which is an important step toward FDA approval to move into clinical trials.
Charter sponsors for this year’s Gala include: Judy Levis Markhoff, Adolph and Rose Levis Jewish Community Center, Lisajane and Kevin Romer, Dr. Marcelle and Andrew Rosen, Florida Atlantic University, Baron Delivery on Demand, Linda & Harry Meran, Mike & Joan Siegel, and the Dave and Sheila Gold Foundation.
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 19 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 over $3M in grants, which has resulted in almost 50 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 following successful results with mice, cats, and sheep and demonstrating critical dosage safety.
- Hosted countless genetic testing and education fairs since 2003 around South Florida and reached more than 1,200 people through screening efforts; and
- 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 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.