South Florida Foundation Making Strides Against Tay-Sachs

BOCA RATON, FL (BocaNewsNow.com) — A local organization that is respected nationally for its work in researching the genetic disorder known as “Tay-Sachs” is preparing an event at Temple Beth El in Boca. Here is their advisory:

//The Mathew Forbes Romer Foundation (MFRF) will celebrate a milestone year as well as its 13th anniversary with “An Evening of Sweetness & Laughter” on Sunday, February 12, 2012 at 5:30 PM at Temple Beth El in Boca Raton.  Not only is 2012 the proverbial “Bar Mitzvah” of the Foundation, it also marks a year in which the Foundation expects to begin clinical trials for the treatment of Tay-Sachs Disease.

“Since beginning our research initiative in 2002 with the National Tays-Sachs and Allied Diseases Association (NTSAD), the oldest non-profit genetics organization in the country, we have been looking forward to the day when we would be able to treat children with these therapies,” said Kevin Romer, president of The Mathew Forbes Romer Foundation, Mathew’s father and the newly elected president of NTSAD.  “We are finally arriving and with the continued support of our donors as well as the community, we look forward to finding a cure for children’s genetic diseases of the brain.”

The research findings and results achieved over the past decade have been made possible thanks to the support of The Mathew Forbes Romer Foundation and NTSAD and the  work of the Tay-Sachs Gene Therapy (TSGT) Consortium,  an international team of researchers which has been focused on finding a cure for Tay-Sachs and related diseases.

The “Sweetness & Laughter” gala’s prestigious “See the Light” Awards Ceremony will recognize two individuals, both of whom have 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

 

The Sweetness and Laughter theme symbolizes how sweet those children afflicted with Tay-Sachs are and how laughter is an important way of coping with the devastating impact of the disease on both the children and their families. In addition to the awards ceremony, there will be a sumptuous dinner with delectable desserts as well as 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.

Major supporters of this year’s progress thus far include Judy Levis and Paul Markhoff, Adolph & Rose Levis Foundation, Karen & Eric Schiffer/Sheila Gold Foundation, Lois & Herm Siegel, Carole Romer, Baron Delivery on Demand, Bettina and Pablo Meles, Linda and Harry Meran, Joan and Mike Siegel, Evan and Joan Deoul, and Lisajane and Kevin Romer.

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 countless 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 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 in the country. 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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