Emotional Event Celebrates Boca Raton Rabbi and Massachusetts Doctor for Their Work; Honors Numerous Children and Their Families Afflicted with Fatal Genetic Diseases
Boca Raton, FL, February 27, 2012: The Mathew Forbes Romer Foundation (MFRF) celebrated a milestone year with “An Evening of Sweetness & Laughter” on Sunday, February 12, 2012 at Temple Beth El in Boca Raton. The event recognized the MFR Foundation’s work over the past 13 years, the community outreach of Boca Raton Rabbi Dan Levin, the research of Dr. Florian Eichler of Mass General Hospital and Harvard Medical School and the families and children afflicted by Tay-Sachs and other fatal genetic diseases. Thanks to over 150 ticket sales, a raffle, and donations, more than $60,000 was raised, which will help the Tay-Sachs Gene Therapy (TSGT) Consortium and its research to find a cure for cure for children’s genetic diseases of the brain.
The TSGT Consortium announced in 2011 that it had cured Tay-Sachs in mice, reached a point where affected cats are thriving after treatment, and demonstrated a rare breed of sheep reaping the benefits of Gene Therapy for treating Tay-Sachs. Treatment proof of concept was demonstrated in May 2011 and feedback from the Food and Drug Administration (FDA), which ultimately approves human clinical trials, has been favorable. The National Tays-Sachs and Allied Diseases Association’s (NTSAD) funding network and the National Institutes of Health (NIH), has supported this work to date with grants of over $5 million. Pledges have also been made for 75% of the additional $1.4 million necessary to reach human clinical trials in 2012.
“2012 is a critical year for us and a time when clinical trials with children for the treatment of Tay-Sachs disease are expected to begin,” said Kevin Romer, president of The Mathew Forbes Romer Foundation, Mathew’s father and the newly elected president of NTSAD. “The progress we are making is fantastic but it’s the generosity of donors and friends of the Foundation that will make the difference and help us find a cure that much faster.”
An impactful video, now available on The Mathew Forbes Romer Foundation’s YouTube site, led the audience through a journey, which introduced some of the children and families afflicted with Tay-Sachs and other diseases, provided an update on the MFRF mission and its progress, and culminated with an introduction of the gala’s prestigious “See the Light” Awards Ceremony honorees. The Foundation’s two award winners have both made outstanding contributions in pioneering and delivering genetic testing and education programs and moving research forward to eventually find a cure.
- Dr. Florian Eichler: Harvard Medical School & Mass General Hospital Neurologist and principal investigator of the upcoming Tay-Sachs gene therapy clinical trials
- Rabbi Dan Levin: Senior Rabbi at Temple Beth El of Boca Raton and tireless supporter of genetic diseases community education
Finally, to end the evening with sweetness and laughter, guests were treated to a comedic performance by Cory Kahaney, a regular on The Late Show with David Letterman and Comedy Central, as well as an Off-Broadway star, and a delectable dessert bar.
The wonderful support for this drive to clinical trials was made possible by the generosity of the major sponsors including: Adolph and Rose Levis Foundation, Paul and Judy Levis Markhoff, Lisajane and Kevin Romer, Eric and Karen Schiffer, Baron Delivery on Demand, Grossman and Roth P.A., Tyco Security Products, Carole Romer, Lois and Herm Siegel, Linda and Harry Meran, Temple Beth El of Boca Raton, Pablo and Bettina Meles, Mike and Joan Siegel, Neil Eisenband, and Evan and Joan Deoul.
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 13 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;
- Helped raise over $2M of funding, which has supported over 30 research projects related to Tay-Sachs Disease and been complemented by over $7M of federal funding to use towards work with the National Institutes of Health;
- Hosted eleven genetic testing and education fairs around South Florida and reached more than 1,000 people through screening efforts;
- Expanded screening panel to include 18 genetic disease tests (three times as many than when the MFR Foundation was founded);
- Created and grew 17 pediatric nursing scholarships across five colleges and universities; and
- Partnered with numerous organizations in South Florida and nationally to drive its mission.
The MFRF is the South Florida affiliate of National Tay-Sachs and Allied Diseases Association (NTSAD) and a member of the Jewish Genetic Disease Consortium. In addition to pioneering genetic education and screening fairs in South Florida in 2003, MFRF co-founded the NTSAD National Research Initiative in 2002. For more information, visit www.mfrfoundation.org.
About National Tay-Sachs & Allied Diseases Association (NTSAD)
NTSAD is one of the oldest patient advocacy groups focused on genetics in the country founded in 1957. With a focus on funding research, the NTSAD has supported thousands of individuals and families from many backgrounds and ethnicities who have been or are affected by Tay-Sachs, Canavan and related genetic diseases around the world. Today, NTSAD is recognized as a leading non-profit patient group with a demonstrated commitment to service, science and support. The programs and services offered by NTSAD fall under three categories: Family Services, Research and Advocacy. Learn more at www.ntsad.org.
About the Tay-Sachs Gene Therapy (TSGT) Consortium
The Tay-Sachs Gene Therapy (TSGT) Consortium is an international collaborative group of scientists committed to translating current results from animal experiments into a human clinical trial. The TSGT Consortium consists of physicians and scientists experienced in gene therapy and basic disease research, from four institutions: Auburn University, Boston College, Cambridge University (U.K.), and the Massachusetts General Hospital/Harvard University. Kevin Romer sits on the Oversight Committee of the Consortium. Learn more at http://www.tsgtconsortium.com/.
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Melissa Perlman
BlueIvyCommunications
561-310-9921 (cell)
melissa@blueivycommunications.com