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FARAFARA Cure FA
rideATAXIA MaprideATAXIA CHICAGO rideATAXIA PHILLY rideATAXIA ORLANDO rideATAXIA DALLAS rideATAXIA NORCAL rideATAXIA SOCAL

 

rideATAXIA Blog

In January 2007, rideAtaxia was born when Kyle Bryant and his father began their 2,500 mile, 60 day cycling journey from San Diego to Memphis, TN to raise awareness and funds for FA research. Now functioning as a program of the Friedreich’s Ataxia Research Alliance (FARA), rideATAXIA offers single day, challenging and family fun bike rides at locations all across the USA. From firsthand accounts of Kyle’s inaugural journey to the most recent news about our annual bike rides, the evolution of rideAtaxia is chronicled in this blog.

 

rideATAXIA Dallas 2017

2017raDallas fellowshipMy feet were clipped securely into the pedals and my helmet was snug on my head. Friends and family in attendance flanked me in our army green tees.
“The Fellowship of the Ride” was my team name, displayed in gold on the front of our shirts. On the back was a J.R.R. Tolkien quote from the first book in The Lord of the Rings trilogy, “Faithless is he that says farewell when the road darkens.”

The rideATAXIA in Dallas on April 1 was the first event I attended within the FA community. Bearing a rare disorder such as Friedreich’s ataxia tends to be isolating. As physical limitations gradually increase over time, we sufferers are left feeling alone. “No one understands me,” I think, more times than I should.

Having melodramatic thoughts like this may not be common among all people with FA, but it sometimes is for me.

I think that the greatness of this event in Dallas lies not in the ride itself, though riding my recumbent trike for three miles was indeed a huge and fulfilling accomplishment; I hadn’t used my legs much in over a decade until I purchased my trike a year ago. Honing your abilities in a world of disability is unspeakably rewarding. 

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rideATAXIA raises over $1 Million in 2016

2016 rideATAXIA blogrideATAXIA began in 2007 with 2 people on bikes (trike for me) and a goal to raise $30,000. We had no idea how we were going to get there. However, our family and friends answered the call and that year we raised over $40,000!

Now the circle of friends and FAmily has expanded with 6 rides across the US and over 2,000 participants annually. It's no longer just my family, there are over 100 FA families involved in the ride. We are all in this together. YOU helped the FA community raise over $1M for FARA through the rideATAXIA program this year. Thank you. 

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rideATAXIA Orlando 2016

2016RAO 1The 6th Annual rideATAXIA Orlando was again held at Waterfront Park in Clermont, Florida on Sunday, November 13, 2016. The weather was absolutely perfect for the 325 riders! The morning was cool (for Florida) and sunny. The combination of all the team’s efforts raised more than $100,000!!!

On a personal level, it was extremely fun being a part of the fund-raising effort and having a great time doing so with everyone at the park that day. My team was very small, but I surpassed my fundraising goal. My small team consisted of my sister, her 12-year-old twins, and Kyle Bryant. You may have heard of that last guy. ;) My sister and one of her kids even road a tandem bike, which I think is pretty cool. My sister and her kids had such a good time that they already committed to doing the ride next year. Be on the lookout for my team in the future, the FAntastic Voyagers. 

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rideATAXIA Chicago 2016

2016rideATAXIAChicago1

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. 

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Ataxian Athlete Initiative Announces 2016 Recipients

AAI2016

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.  Add a comment

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