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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

2009 Accomplishments

Awareness Through Education

The first step in the fight against genetic disease is prevention.  To lay the groundwork for clear communication and understanding between the medical community and potential parents, MFRF focuses on promoting and leading critical awareness, tesing and counseling initiatives.

  • South Florida Testing and Education Fair - For 6 years, MFRF has delivered free genetic testing and education to more than 600 potential parents.  more than 20 percent of the participants were detected as carriers of at least one of a family of fatal genetic diseases.  MFRF is now partnering with The Victor Center for Jewish Genetic Testing housed at the University of Miami Miller School of Medicine to expand the impact of the program.
  • MFRF Nursing Scholarship Grants - Caring for a child with a genetic disease takes a unique person with specialized training.  For nursing students who are called to this field, MFRF provides scholarships to lift some of the burden of education costs.
  • Hoop Shoot - Dozens of kids participated in MFRF's Hoop Shoot free throw competition in May.  The event provided some friendly, fun competition while raising awareness for genetic disease testing and research.

Pursuing a Cure Through Research

MFRF is at the forefront of ground breaking research to find a cure for children's fatal genetic diseases of the brain.  To find a cure or treatment for any illness - cancer, diabetes, genetic disease - scientists must conduct clinical trials involving humans to collect safety and efficacy data for new drugs and devices.  Government agencies approve a clinical trial only when scientists present satisfactory pre-clinical research.

  • Exploring Potential Therapies - The National Tay-Sachs and Allied Diseases Association (NTSAD) Research Initiative, co-founded by MFRF and the NTSAD, has exceeded $1.3 million in funding, leading to an additional $5.5 million in federal funding for research.  Twenty Research Initiative grants have been awarded to explore a variety of potential therapies and processes. 
  • The State Center for Rare and Genetic Neurological Diseases, created with Florida Atlantic University and MFRF, has helped mobilize 30 scientists around genetic and neurological diseases.  They are studying brain synaptic dysfunction in Tay-Sachs animal models.
  • Drive Toward a Cure - Miguel Sena-Esteves, Ph.D. is the principal investigator of the Tay-Sachs Gene Therapy Consortium (TSGTC).  The Consortium consists of nine researchers from world-class institutions, including Massachusetts General Hospital, University of Cambridge in England, Boston College, and Auburn University.  The National insititutes of Health (NIH) has awarded a $3.5 million grant fo the TSGTC to prepare for human clinical trials in three to four years.  This award was eagerly awaited by the NTSAD Research Initiative supporters, including MFRF, who raised nearly $600,000 to assemble the TSGTC, demonstrate treated mice can live to full life spans, and help maintain its research agenda while scientists worked to secure federal funding.

News

  • Kevin Romer has been elected Executive Vice President of the NTSAD.  MFRF is the South Florida affiliate of NTSAD.  Kevin has been a Board of Directors member of the national association since 2000 - first as chair of the Quality Assurance Committee and then as chair of the Research Initiative Committee. 

Celebrating Ten Years

  • On February 7th, MFRF celebrated our 10th anniversary with 175 friends and family at "An Evening of Sweetness & Laughter."  The event raised more than $60,000 twoard the mission of education and research for children's genetic diseases of the brain.  Judy Levis Markhoff was the recipient of this special "See the Light" Award, for her generous support of the Foundation since its inception and her vision anc commitment to its mission have been unwavering.  Past "See the Light" honorees were also recognized for their contributions and support.

 

 





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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