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FARAFARA Cure FA

Remembering FARA Director Nick Johnson

Nicholas A. Johnson

October 19, 1963 - February 20, 2015

“St. Nick”

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.

To focus on Nick's many contributions outside of FARA, he served as chairman of the MDA's Massachusetts State Task Force on Public Awareness. He was very much involved with and led many MDA fund-raising events and appeared annually on the regional broadcast of the MDA Telethon. Nick received many awards from MDA for his accomplishments, including the Personal Achievement Award for the New England Region, the State Personal Achievement Award for Massachusetts, and the National Personal Achievement Award.

In addition to the many roles he played in leadership and inspiration with the MDA and FARA, Nick brought his terrific leadership capabilities to the Boston-area engineering firm, Bard, Rao + Athanas; the Mass. State Energy Advisory Committee; the American Society of Heating, Refrigeration and Air Conditioning Engineers (who inducted Nick into their Hall of Fame); and the national energy field in general.

In short, the FA community is significantly closer to treatments and a cure because Nick Johnson was with us. Each one of our lives, here, is richer because Nick Johnson was part of it. The world is a better place because Nick Johnson was in it, and the world will BE a better place because Nick Johnson's memory and his inspiration remain.

Well done, St. Nick! You are my brother for life and beyond. We will all keep going until we fulfill your dream of treating and curing FA and, when we do, we will owe much of that to you. Thank you.

 

About the Author

The FARA Ambassador Program

The FARA Ambassador Program

The FARA Ambassadors are a united team of patient volunteers living with FA who are committed to supporting FARA in the search for a treatment and cure.
 
Together we seek to know more about FA, and FARA so we can be prepared to represent the community when the opportunity arises; speaking at events, to volunteers, potential donors, scientific groups, pharma partners, media interviews and other awareness and fundraising opportunities. We believe support is key to continued success toward our ultimate goal of treatment and a cure. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community.
 
The FARA Ambassadors are positive, supportive, peer representatives for the FA community, actively raising awareness and funds for FARA. To learn more about the FARA Ambassador Program or to have a FARA Ambassador speak at your event, please contact: info@cureFA.org.

 

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