Children
They represent our future of hope and potential. Our biggest fears are children with life threatening diseases.
Brain
Diseases that affect a child’s brain, the command center, affect the whole body. The last great medical challenge is finding effective ways to get treatments through the body’s natural defenses called the Blood-Brain Barrier.
Genetics
We are living in a historical Genetics Revolution. Genetic-based causes and treatments of diseases are providing unprecedented opportunities for prevention, treatments and cures. The Foundation establishes and expands alliances with universities, hospital and physician networks, and biotechnology companies to make an impact.
Why
These diseases are Life Threatening and affect children of all faiths, colors, creeds, and economic status. In high-risk groups, as many as 1 in 2,500 births are affected, while 1 in 25 people can carry the defective gene.
Where
South Florida is a region with tremendous potential and rapidly growing medical demands, is also fighting major challenges with resources, investment, and national recognition and collaboration. We are committed to the needs of South Florida, the headquarters for our Foundation, by attracting new leaders to help guide our organization’s growth.
We also established a national network with other organizations that share our vision to unite the best resources. Our network includes serving as the South Florida Affiliate of the National Tay-Sachs and Allied Diseases (NTSAD) Association which was founded in 1957, as well as other related regional and national organizations.
How
Our mission continues to promote and lead critical awareness, testing, counseling, and research initiatives that hold promise for the prevention and eventual treatment and cure of fatal children’s genetic diseases of the brain. We have accomplished this (and will continue to) through programs such as:
- Co-Founding the National Research Initiative with the National Tay-Sachs and Allied Diseases Association (NTSAD);
- Helping to raise millions of dollars for funding; Hosting countless genetic testing and education fairs around South Florida;
- Funding more than 30 pediatric nursing scholarships at various South Florida colleges and universities, including Florida Atlantic University, Florida International University, Nova Southeastern University and Broward Community College;
- Partnering with numerous organizations in South Florida and nationally.
In order to accomplish everything we have since our beginning, we have carefully managed our expenses to maximize investment toward our mission of education, testing and research programs. Only 5% of our expenses go toward administrative costs.
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MFRF has celebrated
wonderful progress in gene therapy patient trials, education, and genetic testing for many affected children and families with fatal genetic diseases of the brain. Still, there is so much more to do, including earlier detection and expanding treatment availability.
