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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

Accomplishments 2011

Since being launched, The Mathew Forbes Romer Foundation has:

  • Raised $1.5M toward its mission with only 5% spent on administrative costs
  • Co-Founded the National Research Initiative with the National Tay-Sachs and Allied Diseases Association (NTSAD)
  • Helped raise over $2M of funding, for the NTSAD to support over 30 research projects; Funding complemented by over $7M of federal funding from the National Institutes of Health
  • Hosted genetic testing and education fairs around South Florida. Celebrating its 11th event in 2011; Reached more than 1,000 people through screening efforts
  • Increased screening panel to cover 19 genetic disease tests - three times as many than when MFRF started its screening program
  • Funded 17 pediatric nursing scholarships at various South Florida colleges and universities, including Florida Atlantic University, Florida International University, Nova Southeastern University and Broward Community College
  • Partnered with numerous organizations in South Florida and nationally to drive its mission

“Since beginning our research initiative in 2002 with (NTSAD), the oldest non-profit genetics organization in the country, we have been looking forward to the day when we could bring real hope to families fighting these fatal diseases,” said Kevin Romer, president of The Mathew Forbes Romer Foundation, Mathew’s father and the newly elected president of NTSAD. “This year we are on the brink of having treatment move into clinical trials with children thanks to the continued support of our donors, community, and the broader medical and science community.”

2012 and Beyond...

This year marks a critical time for the Foundation, during which clinical trials in children for the treatment of Tay-Sachs disease are expected to begin. An unprecedented scientific, medical, and family advocacy partnership around the Tay-Sachs Gene Therapy Consortium formed and has prospered since 2008. In fact, the consortium announced in 2011 that it had cured Tay-Sachs in mice; reached a point where affected cats are thriving after treatment; and demonstrated a rare breed of Sheep reaping the benefits of Gene Therapy for treating Tay-Sachs. Treatment proof of concept was demonstrated and presented at the May 2011 American Society of Gene/Cell Therapy meeting. Feedback on the results from the Food and Drug Administration (FDA), which ultimately approves human clinical trials, has been favorable. We are confident that scientists are now on the threshold of human clinical trials.

The NTSAD funding network, with the National Institutes of Health (NIH), has supported this work to date with grants of almost $5 million. Further, pledges have been made for 75 percent of the additional $1.4 million necessary to reach human clinical trials in 2012. The MFRF and its partners need to raise the remaining money and are truly racing against the clock. One year represents 25 percent of the life expectancy of a child with Tay-Sachs.





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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