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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

2012 / 2013 Accomplishments

The Mathew Forbes Romer Foundation (MFRF) was inspired by the strength of a little boy with Tay-Sachs Disease - to lead the fight for education, quality assurance, and research of fatal children’s genetic diseases of the brain.

Over $1.7 million has been raised by the Foundation since its inception with only 5% of the money raised going to administrative costs. MFRF has provided leadership and funding for projects represented by the theme for the 15th Anniversary Gala...Caring and Curing.

Caring:

  • Since 2003, MFRF has funded over 20 nursing school scholarships with four academic institutions in South Florida to promote care needs for our families.
  • This year we are pioneering nursing school training of intensive care in the home with Florida International and Florida Atlantic Universities.
  • Since 2003, we have grown the South Florida Genetic Testing programs having screened over 1,000 potential parents with over 20% detection rate.
    • Our screening partnership with the Victor Center throughout South Florida expanded to include the Miami Children’s Hospital Genetics Department and Brain Institute.
    • We are beginning to work with the JScreen program promoting and offering screening for many diseases online and from your home.
  • Together with the National Tay-Sachs and Allied Diseases Association (NTSAD) families and caregivers are benefitting from the “Parenting a Child with Life-Limiting Illness” Film.

Curing:
  • In 2002, MFRF in partnership with NTSAD, founded the Research Initiative.
    • 41 projects and $2.9 million later in grant awards have led to over $10M of National Institutes of Health (NIH) grants.
    • This year the program received a record number of proposals from around the world.
  • MFRF continues as the charter sponsor for the Medical and Scientific Sessions at the annual NTSAD Family Conference.
  • In 2007, we helped establish the International Tay-Sachs Gene Therapy Consortium to drive to clinical trials.
    • Through gene therapy expertise from the University of Florida, we learned during pre-clinical animal treatments critical insight on proper dosing for safety and efficacy. We have reset our goals for clinical trials with our children with a higher degree of confidence.





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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