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FARAFARA Cure FA

6th Annual Race for Matt & Grace

6thMattGrace1Most of us recognized September 25th as International Ataxia Day. One day later, nearly 300 people went a step further to support the 6th Annual Race for Matt & Grace. Bryant University in RI was overrun with the New England FA community coming together to support two of our favorite FA’ers. We ran, walked, and rolled 3.1 miles along a cross-country course to fight FA, together. Racers were digitally timed to spark the competition and officially place Friedreich in last place. Runners pushed through the pain to emerge from the woods at the top of the list, while walkers enjoyed a cool fall weather stroll with dogs, children, and family. 

When the race was over, the day had just started! Down the road, everyone gathered for an outdoor cookout, filled with raffles and live entertainment. FARA shared the research pipeline from 2004 – a few bars beginning to branch out – compared to the kaleidoscope of research efforts and clinical trials underway today. Fellow ambassadors Jean Walsh and Erin O’Neil shared their personal stories battling FA and growing with the FAmily. Jean shared her birthday with us, using it as an example that FA can make life trickier, but can never stop us from living it! (We shared cake with her… I think we were about even!)

6thMattGrace2From race registration fees, raffle entries, generous donations, and fundraising proceeds from events all summer, close to $80,000 has been raised for FARA from the team in RI!!! And with several more “one-night only!” events before the end of the year, that number will keep climbing. I will remain grateful to everyone who supports our cause and continues fueling FARA’s burning desire to find the cure. I will remain changed forever by the dedication, energy, and compassion Matt, Grace, their families and close friends have shared with me. I hope the 7th race introduces more people to this amazing community.

AlexFieldingAlexFieldingsignature

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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