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FARAFARA Cure FA

Team FARA Blog

Team FARA members are running, walking, biking and swimming for FA research around the world.

While they are geographically dispersed, Team FARA is united with the same goal: to draw attention to FA through acts of physical endurance and to support the advancement of FA research towards treatments and a cure for FA.

Team FARA Ottawa and Lake Placid Marathon Challenge

TeamFARA MFsummer1

On Friday, May 27, I embarked on a running journey that would span over 1,000 miles in a 17 day period. I had run for Team FARA before, but this time I wanted to do something a little extra special. After a lot of thinking, I came up with the idea of the Ottawa Marathon and Lake Placid Marathon Challenge. These two races would be separated by a mere fifteen days and would certainly test my running mettle. The motivation and inspiration for this endeavor was an amazing girl named Cecelia Egan. Cece, as her friends call her, is one of my daughter's closest friends in her 7th grade class and one of the kindest and bravest individuals I have ever met. I was truly honored to run in Cecelia's name and I was so incredibly grateful to have the opportunity to run for her. Add a comment

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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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Tour de Palm Springs 2016

2016PS1I was checking my email on a Wednesday evening, I had received an email from Team FARA reminding me about Tour de Palm Springs on January 23, 2016. There were only 10 days until the event, but living in southern California a little over an hour drive from Palm Springs, I knew I could make it! So I tuned up my hand cycle, packed my gear, and began planning.

My girlfriend and I made the drive to Palm Springs around noon on Friday the 22. We arrived in Palm Springs just before sunset the evening prior to the ride. We checked into our hotel, which was walking distance to Downtown Palm Springs. We picked up our event packets at the registration booth, looked over the ride info, and familiarized ourselves with the route. Then we prepared to get a good night's sleep.

We chose the 10 mile course which started Saturday at 10 AM. At breakfast the next morning we were greeted by my parents and friends. Together we went over and prepped my bike, got me on and set me on my way, I rode the bike a few blocks to the starting line.  Add a comment

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FARA Represented in IRONMAN Lake Placid

FARA was represented in Lake Placid's annual IRONMAN competition on July 26, 2015! Hannah Feinberg, a friend of the FA community, was inspired by the Avery sisters. Hannah has been friends with Laurel and Alison Avery for more than 15 years, and when they were diagnosed with FA, she knew she had to do something to help. 
 
Before Laurel was diagnosed with FA shortly after age 8, Hannah had never heard of FA. (Alison began experiencing FA symptoms around age 15.) "This relentless disorder has already robbed them of their energy, the ability to walk unaided, and some of their independence. The symptoms affected our ways of having fun, but in no way did it alter their amazing, loving, and kindhearted personalities," says Hannah. 
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