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FARAFARA Cure FA

Milwaukee Icebreaker Indoor Marathon

MattFitzgerald1On January 31, 2016, I participated in the Milwaukee Icebreaker Indoor Marathon at the Pettit National Skating Center in Milwaukee, Wisconsin. This was my very first time running for Team FARA, and it was a truly extraordinary experience. The Pettit Center is a very unique venue. As we circled the track 94 times, we were treated to the view of speed skaters zipping around the inner circle of the rink. The sounds of scraping ice resonated in the background while the disc jockey played an assortment of inspiring tunes while we trudged along the 26.2 miles.

What made running this race extra special were the people I was running for. I laced my sneakers that morning for my two amazing friends, Sam and Alex Bode. Meeting these two individuals was the product of a little bit of luck and fate. During the summer of 2015, I began doing some research on Friedreich’s Ataxia. My daughter has a very close friend with FA and I wanted to learn everything I could about this disease. During the course of my research, I came across a very inspiring video featuring Sam, Alex and their mother Mary. After watching the video, I knew I just had to meet these three. A short time later, I got in contact with Mary, Sam and Alex and had lunch at their home. Quite simply, we became fast friends and I can’t tell you how happy I am that we have become such close friends. You will not find a more caring, thoughtful, generous and selfless bunch than that crew! Sam and Alex inspire me with their drive, persistence and resilience. What is most distinctive and memorable about these two siblings is the way you feel when you are with them. Laughter is a staple of their household and smiles are plentiful! Quite simply, Sam and Alex inspire me to be a better person and a better friend. 

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The more I learned about FA, the more I wanted to become involved. I struggled to think of a way I could contribute and make a difference. What could I do? It was a daunting question and I racked my brain thinking of a way to help. It then dawned on me that I could use my love of running to help my new passion: raising awareness of FA and trying to find a cure! I knew I might not be the fastest runner, but I could use my legs to try to help FARA, a truly incredible organization.

Running for Sam and Alex was an inspiring experience. I would give absolutely anything to rid the world of FA. I’ve seen the struggles and hurdles that Sam and Alex on a daily basis, but I am truly inspired by the courage and never quit attitude they display EVERYDAY. Sam and Alex have not let FA get in the way of living their lives to the fullest. I am in awe of the bravery my friends show every single day.

As I ran around the track, my mind was occupied with thoughts of “what’s next”. I know that one way I can make a difference is to run. The pride and purpose I felt when I put on my FARA running jersey was indescribable. I am dedicated to using my love for running to help raise awareness and put an end to FA forever. This will be the first in what will hopefully be many races. Thanks to the kindness and generosity of so many thoughtful and caring people, we were able to raise $1,700 for FARA. In my mind, this is just a start. I am not sure where my next race will take me. It might bring me to Oklahoma City, Nashville or Raleigh. Wherever the place may be, I will run my heart out for Sam and Alex. Someday, we will put an end to FA forever!

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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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