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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

2010 Accomplishments

Testing and Education

  • When Mathew Romer lost his fight with Tay-Sachs in 2003, the Foundation became determined to protect hundreds, if not thousands, of future families from this horrible ordeal. We are now approaching 1,000 people who we have reached through eight South Florida Genetic Testing and Education Fairs at 10 locations.
  • MFRF has developed solid partnerships with Genzyme, Tenet/West Boca Medical Center and most recently with the Victor Center for Jewish Genetic Diseases. with the Victor Center, we are not offering a screening panel with 18 tests -- three times as may tests than when we began our journey.
  • Over 15 nursing scholarships have been granted to students at South Florida colleges and universities. MFRF sponsored the pediatric evaluation training lab at Florida International University's new nursing school building.
  • MFRF partnered with the University of Miami Miller School of Medicine for DNA Dat at the Miami Museum of Science to teach young people about DNA and how important it is to our health. The children participated in hands-on activities, including making a double helix our of candy.
  • For the past five years, MFRF has sponsored the National Tay-Sachs and Allied Diseases Annual Conference Medical and Scientific Session to explain the deseases and the progress we are making with research.

Research
  • In the seven years since the MFRF helped co-found the National Tay-Sachs and Allied Diseases Association Research Initiative, our network has raised over $1.5 million and funded 23 valuable projects.
  • These results were the key to attracting over $7 million of additional federal funding from the National Institutes of Health.
  • Significant progress is being made with filling the research pipeline for potential treatments and cures.  New South Floria talent has emerged.  For example, researchers with The State Center for Rare and Genetic Neurological Diseases (CRGND), co-created by Floria Atlantic University and MFRF, have developed novel imaging technologies.
  • With MFRF as a pioneering supporter of The International Tay-Sachs Gene Therapy Consortium, we are on track to launch clinical trials with children in the next two years.  We last reported that we had cured Tay-Sachs mice; now  we have wonderful stories of cats and even sheep helping to demonstrate the benefits of the treatment so we can move to children as soon as possible.





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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