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The Mathew
Forbes Romer
Foundation, Inc.
is an IRS
designated
nonprofit,
tax-exempt
organization
under Section
501(c)(3) of
the Internal
Revenue Code

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Research + Education

2008 Accomplishments

 

Testing and Education

  • The Fifth Annual South Florida Genetic testing and Education Fairs were held at The Christine E. Lynn College of Nursing at Florida Atlantic University and Broward General Medical Center last fall with Genzyme Genetics.  In five years, more than 600 people from all backgrounds have received free testing resulting in an unanticipated detection rate of more than 20% for at least one of six fatal children's genetic diseases.
  • To mark Biosciences Month in Florida and DNA month nationally, MFRF held its second "Make Your Own DNA Necklace" program during the Sprint Children's Fair in March.  Hundreds of children collected their own DNA (from their saliva), to make "cool" necklaces with the help of high school biotechnology students.
  • The Foundation funded four new Pediatric and Genetic Nursing Scholarship grants for a total of 13.  These scholarships have assisted five South Florida colleges including Florida Atlantic University, Nova Southeastern University, Florida International University, and Broward and Miami Dad Community Colleges.
  • MFRF further expanded support for the Neurogenetic Patient Registry, now tracking more than 500 children through The Miami Children's Hospital (MCH) Brain Institute, and the Pediatric Genetics Residency & Fellowship with MCH in partnership with The University of Miami School of Medicine.
  • The Foundation continued as one of the select member organizations of the Jewish Genetic Disease Consortium (JGDC) to efficiently educate medical professionals, rabbis and the Ashkenazi Jewish population about carrier screeining.

Research

  • The National Research Initiative, co-founded by MFRF, continued to reach new milestones.  More than $1 million in funding from our network with the National Tay-Sachs and Allied Diseases Association (NTSAD) compliments $2 million in federal funding to support more than 17 research programs with promising results.
  • MFRF strongly supports The Tay-Sachs Gene Therapy Consortium integrating four research institutions worldwide.  The team 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 (1).
  • Through The State Center for Rare and Genetic Neurological Diseases (CRGND), co-created with Florida Atlantic University, researchers have pioneered the genetics behind synaptic malfunction in Tay-Sachs animal models. "As a result of the CRGND, 30 investigatiors have now crystallized around the subject of rare, genetic and neurological diseases," accouding to FAU's Biological Sciences Chariperson.
Recognition and Outreach

 

  • In January, Lois Victor, Founder of The Victor Center for Jewish Genetic Diseases at the Albert Einstein Medical Center in Philadelphia and now The University of Miami Miller School of Medicine, and Walt Michen, CEO of West Boca Medical Center were honored with the 2008 "See the Light" Awards.
  • At last year's gala, MFRF presented its accomplishments for the year and announced its goals of establishing new partnerships to expand its impact including with The Victor Center.





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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