Matt is a 34-year-old wonderful young man from Johnston, RI who was diagnosed with Friedreich's Ataxia (FA) more than 21 years ago. He lives in Johnston, Rhode Island with his parents and beloved canine companion, Magnum. Matt is also the 'big brother' to twins Andrew and Nick. Matt loves watching sports and seldom misses an opportunity to watch his all-time favorites, the NY Yankees, NY Giants, and the Boston Bruins. Watching golf is also high on his list. When not engaged in the excitement of a game, you will find Matt listening to all kinds of music. In particular, he loves to tune in to Channel BPM on XM radio, and when not working out on his weight machine, you may find him outside working on his tan. Matt is extremely family oriented, fun-loving, and one of the first thing people who meet him remark is just how caring he is. He is particularly fond of his “FAmily,” the network of families, friends, scientific researchers, advocates, and others diagnosed with FA who support one another and the work of the Friedreich's Ataxia Research Alliance (FARA) in its mission to slow, stop, reverse, and cure FA.
In September 2008, just before her 13th birthday, Grace Hopkins was diagnosed with FA, a degenerative neurological disease for which there is presently no treatment or cure. The diagnosis came after several years of trying to find the cause of Grace's balance and gait problems. Finally, a genetic test at Mass General confirmed what the doctors suspected. The news was life-changing for the entire Hopkins family. They found out everything we could about FA, and none of what they learned about this very rare disease was encouraging including that Grace could expect to be in a wheelchair within a few years; gradually lose her abilities to move, speak and see; and to develop a potentially fatal heart disease. They also learned about some good things, however; such as the FA Parents Group, where they met courageous and generous people with whom they could share their experiences, joys, and sorrows; and FARA a group of far-seeing and dedicated folks who are providing real hope for FAers through funding promising research and treatment avenues.