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FARAFARA Cure FA

5th Annual Race for Matt and Grace

The 5th Annual Race for Matt & Grace took place on Saturday, September 20, 2014 in Bryant University in Smithfield, RI. This 5K Race is held in honor of Matthew DiIorio and Grace Hopkins and to benefit those affected with FA and the research alliance group, FARA. This was my third year in a row attending the event, and each year it amazes me how much love and support is given to both the DiIorio and Hopkins families.

Being newly diagnosed with Friedreich’s Ataxia only three years ago, was a tough time for me. I was still attending college at Johnson & Wales University in Providence, RI, which was five hours from home. Not having my family close to me with the new struggles and questions of living with FA, I wanted to get involved. I saw there was the 3rd Annual Race for Matt & Grace and I decided to go with my sister to connect with families and learn more about FARA. Looking back now, I am so grateful to have connected with the DiIorio Family and other families because now I have lifetime relationships with them. Attending the 5K Race of Matt & Grace is a yearly tradition my family and I will share.

The 5th Annual Race for Matt & Grace was set on a beautiful Saturday morning at Bryant University, because that is where Matt attended college. The race started off by an introduction of Mike Montecalvo, who works at the news channel, WPRI-TV Channel 12. Two speeches were given by both myself and Kyle Bryant. I talked about living with Friedreich’s Ataxia has affected my life positively because I wanted to explain that yes, living with Friedreich’s Ataxia can be tough, but it has also given me opportunities. These include being a FARA Ambassador, completing a clinical trial, becoming active in my own community and more. Kyle spoke of how grassroots events are so important to raise awareness and funds for research to help find a cure!

After the speeches were completed, the race took off! Those who biked, rolled and walked took a nice course around the beautiful campus. Those who ran were on the field. A team of runners called the Marauders got together to race for a cure! It was a perfect fall day to do either. My dad, mom and I walked the course, but my 13 year old brother ran the course. After everyone completed their courses, prizes were given out.

The day continued with the after party at The Last Resort, which was perfect to enjoy each other’s company! There was live entertainment, food and games with raffle prizes! All the proceeds continued to go to FARA, which were great ways to contribute! More speeches were given by Erin O’Neil, Jean Walsh and Kyle Bryant. Erin spoke of how a cure will be here soon with the four current trials going on and the four upcoming trials. Jean expressed how despite living with Friedreich’s Ataxia, she has still lived a fulfilled life. And Kyle thanked Michael Crawley for his efforts working as a co-chairman for this event helping shape this touching event together!

It always warms my heart to see all the generous people come out and support these two individuals and the FA Community. Past events have generated $90,000 for FARA! I can’t wait to attend next year :)

Christina

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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