It was the 5th year for rideAtaxia Chicago and I have been lucky to go to two of them. Each time I go I have more fun and meet more awesome people who are supporting FARA to cure FA. It was a huge success raising over $90,000 and run by FARA and great FAmilies like the Young family and their friends who go all out for the event. If you’ve never been to a ride it’s an amazing experience. We came over from FA Woodstock which made the weekend even more fun and it was very exciting when we arrived to meet representatives from Horizon Pharma and Reata Pharmaceuticals who have drugs in clinical trials for FA and came out to support our community.
Ataxian Athlete Initiative Announces 2016 Recipients
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The Friedreich’s Ataxia Research Alliance (FARA) is proud to announce the recipients of this year’s Ataxian Athlete Initiative (AAI).
The AAI is a unique program that provides adaptive cycling equipment to people with ataxia who have demonstrated the desire to stay active and healthy despite their disabilities. Friedreich’s ataxia (FA) is a rare disease that affects balance and coordination and has symptoms such as vision and hearing loss and often results in life shortening heart complications.
This year, the AAI was sponsored by Catrike, UVA Sun Systems, Front Burner Brands, The Texas Irish Foundation, and a new partnership with Global Genes through their RARE Patient Impact Grant program which helped fund the US recipients.
“The goal of the RARE Patient Impact Grant program is to fund projects that make tangible differences in patients’ lives. The Ataxian Athlete Initiative is a program that is the epitome of true impact and we are proud to support the Friedreich’s Ataxia Research Alliance’s efforts. We hope to expand the grant program each year so we can support more worthy projects in the rare community.” – Amanda Knitter, Director of Patient Advocacy, Global Genes
AAI grants are administered through a competitive application process. Applicants research the most appropriate adaptive cycling equipment to suit their abilities and describe how such equipment would help them to reach their fitness goals and improve their quality of life.
Read more: Ataxian Athlete Initiative Announces 2016 Recipients
2016 rideATAXIA NorCal
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June 4, 2016 was a beautiful day for a good ole bike ride. Considering that we dedicated this day to the rideATAXIA in NorCal. We had a very good turnout this year. Our ride had close to 300 riders. We raised $90,151.00 and the donations continue to roll in. This is incredible!
rideATAXIA Atlanta 2016
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At 9 am on the morning of May 15, 2016, a large crowd gathered at the trailhead at Fowler Park in Cumming, Georgia. Onlookers stared: why were all these adults riding tricycles? By the end of the day they would take home some inspirational stories about the rare disease Friedreich’s ataxia, and the people who wouldn’t give up without a fight. This was rideATAXIA Atlanta.
rideATAXIA Dallas 2016
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Saturday, April 9, 2016 began a cool, cloudy morning in Denton, TX. The University of North Texas was home to rideATAXIA Dallas, and I began the day some 25 miles north of the cyclists starting point at the 50 m rest stop. Adjacent to the shores of Lake Ray Roberts, my family and I (at least part of my family), along with Outback steakhouse assembled our hospitality tents. Outback cranked up the heavy-duty portable grill to cook steak and chicken for the riders. My family coordinated drinks and energy-packed snacks. I became “rest stop greeter”, a job that I love, and did my best to spread FA awareness with the riders. (Click HERE to see the routes riders followed through Denton.)