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The Mathew
Forbes Romer
Foundation, Inc.
is an IRS
under Section
501(c)(3) of
the Internal
Revenue Code

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Research + Education

2002 Accomplishments

  • This year offers more hope than ever as great strides continue in Genetics Research for Tay-Sachs, Canavan and other allied diseases. The Research MFRF funded in 2001 at the National Institutes of Health was published in the Journal of Human Molecular Genetics.
  • At the 2002 NTSAD's Annual Conference "Science, Medical and Research" session the Foundation as part of the NTSAD Research Initiative, announced two research grants and provided update on strategic research initiatives.
  • National Tay-Sachs and Allied Diseases Association (NTSAD) National Research Initiative Committee Chairman (Program planning and funding sources). MFRF foundation contributed to this initiative and was matched by other NTSAD chapters to achieve the goal of awarding research grants in April 2002.
  • Speaker at South Florida launch of the US legislation titled Rare Diseases Act of 2002 with Representative Mark Foley and the National Organization of Rare Disorders (ORD)
  • On May 20, Mathew Forbes Romer becomes the oldest living Tay-Sachs child.... Renewing the inspiration and urgency!
  • Becomes a member of the Genetic Disease Foundation headquartered in New York.
  • Health & Wellness Expo Exhibitor (Levis JCC and WBMC), for the second year continued education efforts in Palm Beach County, Florida.
  • Third year of providing scholarships promoting critical care pediatric nursing to RN candidates.
  • Formulating University of Miami research and education collaboration opportunities.
  • International Genetic Testing Training Videotape and user's manual produced with Dr. Michael Kaback (who pioneered Tay-Sachs and Quality Control) and distributed to up to 40 labs.
  • Third year of providing scholarships promoting critical care pediatric nursing to RN candidates.
  • Boca Raton Community Hospital Education Seminar conducted in February focusing on education and importance of genetic testing for these rare diseases.
  • Planning underway on the third annual See the Light Awards Gala honoring scientific, medical and educational leaders as well as affected children.
  • Foundation media coverage in newspapers, television, and radio approaching fifty occurrences.

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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