To lose her first child, Evie, to a fatal genetic disease of the brain was devastating to a South Florida mom who had recently relocated from New York. To learn that she was at high risk for carrying the disease, and learning that her doctor simply failed to inform her, made matters worse. And finally, to be told five years later that the grandmother had a late onset version of the disease – misdiagnosed as Muscular Dystrophy – only added to this horrible tragedy.
In response to situations like Evie’s and to hopefully prevent other families from facing the tragedy of losing a child to a fatal genetic disease, The Mathew Forbes Romer Foundation launched and expanded its major educational campaigns to raise awareness and increase testing. directed at medical professionals and the general population in South Florida, MFRF hopes to raise awareness of these conditions and eliminate confusion. They have already accomplished this by hosting numerous Genetic Screening Fairs throughout Miami-Dade, Broward and Palm Beach Counties, as well as partnerships with Florida universities in order to offer testing to young adults.