About Us
Matt DiIorio
No two words perhaps better describe Matthew DiIorio than inspirational and unselfish. In his 40 years of living, Matt literally inspired thousands in whatever he was involved but no more so than getting people to participate in raising funds and awareness and making the need to find a treatment and a cure for Friedreich's Ataxia a priority. Through each challenge Matt encountered during his 27-year battle with FA, he always managed to find the good in it, and it was Matt’s mission to help others with FA experience the benefits of the FARA community, which has converted an FA diagnosis from a lonely place of uncertainty into one full of hope and optimism.
The beloved son of Sallyann and Jack DiIorio and big brother to twins Andrew and Nicholas, Matt passed away on the Fourth of July, 2021 due to complications from FA. Matt was a devoted sports enthusiast and passionately enjoyed watching golf and his team favorites - the NY Yankees, the NY Giants, and the Boston Bruins. Of equal interest to Matt was his love of music. When not engaged in the excitement of a game, you would likely find Matt listening to music or often serving as a top-notch DJ at some event.
His smile contagious, his spirit infectious, and his charm, grace, and dignity forever intact, Matt was always there for anyone who needed him. An example of a true leader is one who serves by example, and he never let FA define who he was. His courage and determination to make a difference for others is the way he lived his life and unequivocally the way he will be remembered.
Grace Hopkins
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. .
