Educating the Community

To lose a first child, Evie, to a fatal genetic disease of the brain was devastating enough to a South Florida mother who moved from New York. To learn that she was at high risk for the disease beforehand and her doctor did not inform her, made matters worse. To be told five years later that the grandmother has a late onset version of the disease that was misdiagnosed as Muscular Dystrophy adds to this horrible tragedy. In response to situations like this, the MFRF launched and expanded major educational campaigns directed at medical professionals and the general population in South Florida to raise awareness of these conditions and eliminate confusion.

Supporting the Community

Nicholas is unable to produce critical brain matter. The only chance he has of survival is successful experimental gene therapy. Unfortunately this therapy is not available in South Florida, causing significant additional hardship to the family. The MFRF provided support to the family by helping with the travel expenses. In addition, it is funding gene therapy research to channel efforts back to South Florida.

Fighting for the Community

Matthew was born to a family in South Florida with a fatal genetic disease despite both parents being tested for the occurrence of the defective gene and being told that they were not carriers. The MFRF funded and produced, in association with a pioneer of mass genetic testing and screening, Dr. Michael Kaback, the first ever laboratory training video and distributed it to 40 laboratories worldwide.