Nicholas A. Johnson
October 19, 1963 - February 20, 2015
Nick Johnson was a fine man who lived his life well. He fought his fight—our fight—so graciously that I and other FARA colleagues referred to him as “St. Nick.”
A gifted and accomplished athlete in his younger years, Nick was number one on his tennis team and shortstop on the baseball team. He and I often joked that any bad years suffered by the Boston Red Sox between 1985 and 2000 resulted directly from FA having deprived the team of an all-star infielder in the form of Nick Johnson.
I came to know Nick when he told me he wanted to help FARA in its efforts to advance treatments for FA. In very short order, we asked him to join FARA's Board of Directors, and he began immediately applying his special gifts, talents and relationships to accomplishing our mission. He was instrumental in bringing the Muscular Dystrophy Association (MDA) and FARA together in common cause, playing a key role in the initial meetings of the leadership of the two organizations and in building the relationship into the tremendously effective partnership it has become. More recently, Nick and his wife Sue played the pivotal role in bringing Voyager Therapeutics together with FARA and the FA community, resulting in Voyager's commitment to develop a gene therapy program for FA that is so powerfully promising of providing a therapy for our disease.