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Kevin Romer Elected Executive V.P. of National Tay-Sachs and Allied Diseases Association

Co-Founder and President of 10-Year-Old South Florida Education and Research Foundation Strengthens Partnership with Oldest National Genetics Organization

BOCA RATON, FL (July 20, 2009) – The Mathew Forbes Romer Foundation (MFRF), a not-for-profit organization based in South Florida and dedicated to the education and research of children’s genetic diseases of the brain, today announced that its co-founder and president, Kevin Romer, has been elected to executive vice president of the National Tay-Sachs and Allied Diseases Association (NTSAD).
MFRF, which was established in 1998, is the South Florida affiliate of NTSAD.  Romer has been a Board of Directors member of the national association since 2000, and his election marks a significant milestone in MFRF’s history.  In 10 years, MFRF has raised more than $1 million to fund the access to quality genetic testing, research of genetic diseases, and bring diagnostic and treatment options.  By partnering with national organizations, including NTSAD, the Jewish Genetic Disease Consortium, and the National Organization of Rare Disorders, the Foundation has extended its reach beyond South Florida.  
In addition, The NTSAD Research Initiative, co-founded by MFRF and NTSAD, has exceeded $1 million in funding leading to an additional $2 million in federal funding for research.  The Gene Therapy Consortium, which is supported by the Initiative, has announced an unprecedented goal of reaching clinical trials for Tay-Sachs disease in three to four years and has already demonstrated that treated mice can live full life spans.
 “We can now foresee a day when a cure and treatments for fatal diseases, such as Tay-Sachs, is a reality,” said Romer.  “Pooling our collective intellectual national and international talent, scientific knowledge, and financial resources for the good of all children’s genetic diseases of the brain makes sense.  We are proud and honored to lead the South Florida movement and be a part of the international effort toward a cure.”
For more information, call The Mathew Forbes Romer Foundation at (561) 477-0337 or visit www.mfrfoundation.org.
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The Mathew Forbes Romer Foundation's mission is 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




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