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

 

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.

 

Strong Partnership Funds the 2019 Ataxian Athlete Initiative (AAI) for People with Ataxia

DOWNINGTON, PA, June 2019 - The Friedreich's Ataxia Research Alliance (FARA), the Burrows Hill Foundation, Catrike, The Texas Irish Foundation, and UVA Sun Systems have partnered once again to offer adaptive cycling equipment through Ataxian Athlete Initiative (AAI). The AAI is a unique program providing adaptive cycling equipment to people with ataxia who have demonstrated a strong desire to stay healthy and fit despite their progressive disabilities.

"Catrike supports people who want to remain active no matter their level of ability. We are proud to be part of this continued partnership." - Mark Egeland, GM, Catrike. catrike.com

Ataxia is a debilitating neuro-degenerative disease affecting children and adults. Friedreich's ataxia (FA) is the most common of inherited ataxias, affecting balance and coordination and has symptoms such as vision and hearing loss and life-shortening heart complications.

"We are passionate about helping others, and we are passionate about cycling. The AAI is a powerful combination of the two, and we are proud to be part of it." - Scott Carson, Texas Irish Foundation. texasirishcycling.com/texas-irish-foundation

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.

"I no longer grieve the loss of all the activities I can no longer do like run and ski. I focus on what I can do,and I feel I can still do a lot. Being physically active has made me more resilient and models to my kids that ataxia is just a diagnosis but not my life." says 2019 AAI recipient Carrie Thurston.

This year, the AAI was sponsored by Catrike, UVA Sun Systems, The Texas Irish Foundation and The Burrows Hill Foundation. The Burrows Hill Foundation generously provided over 60% of the funding for the 2019 AAI.

"The Burrows Hill Foundation is aware of how important it is for those with ataxia to stay active and healthy, and we are honored to be able to help provide adaptive cycling equipment to these worthy applicants." burrows-hill.org

The AAI has provided equipment for 62 individuals since 2009. In 2019, the AAI funded 9 grants for adaptive cycling equipment to athletes from 6 states and 3 countries including: Allison Dana of Fort Mill, South Carolina, Carrie Thurston of British Columbia, Canada, Geraint Williams of Wales, United Kingdom, Jarrod Poston of Bowling Green, Kentucky, Justin Bolinger of Jordan, Montana, Michael Yuan of Wilsonville, Oregon, Rick Reyes of Juneau, Alaska, Ryan Slade of Lakeway, Texas, and Yasin Rehmanji of Toronto, Canada

Visit curefa.org/aai for more information and to view more photos of past recipients. The next application cycle begins in Spring 2020.

About Friedreich's Ataxia Research Alliance
The Friedreich's Ataxia Research Alliance (FARA) is a national, public, 501(c)(3), non-profit, tax-exempt organization dedicated to curing Friedreich's ataxia (FA) through research. FARA grants and activities provide support for basic and translational FA research, pharmaceutical/biotech drug development, clinical trials, and scientific conferences. FARA also serves as a catalyst, between the public and scientific community, to create worldwide exchanges of information that drive medical advances. For more information about FARA, visit curefa.org. facebook.com/curefa | @CureFA_org | CureFA.org

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rideATAXIA Dallas 2019 Dedicated to Sam Brown

Screen Shot 2019 04 02 at 4.07.40 PMMany people think it is "unlucky" or "unfortunate" to be a "winner" in this genetic lottery we call Friedreich's ataxia (FA), and in many respects, I absolutely agree. However, I cannot deny that FA has enriched my life with people who teach me the very definition of grit and character. One of those people was my friend Sam Brown.

I met Sam Brown the night before the first rideATAXIA Dallas in 2011. Beyond introductions, few words passed between us but his smile spoke volumes. I caught him observing me from afar a couple of times. I would look over and he'd flash his signature grin.

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2018 Woodstock and rideATAXIA Chicago

ChicagoFA Woodstock and RideATAXIA Chicago are two events I have always wanted to make it to. I went to FA Woodstock on Friday, July 20th for the day and got to meet a lot of Midwest FA families. FA Woodstock was a fun event to be at, specifically because we got to relax on the Flying H Ranch and bond with each other throughout the entire day (two full days for those who went the whole time).

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2018 rideATAXIA Chicago - Alex Fielding

rideataxia blog 3Most people have that one trip they look forward to every year. Some go to warm beaches in Mexico to escape the cold of winter. Some meet family and friends on a cruise ship for entertainment and exploration. Others head out in the wilderness for an adventure with Mother Nature. For me, I fly to Chicago to visit my cousins Brandon, Audrey, Indiana, and Lulu, and join dozens of FA patients, family, and friends at RideAtaxia!

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Cyclists ride around Channahon area to raise money to cure rare disease

rideATAXIA Chicago

On July 22, hundreds of cyclists congregated at Central Park in Channahon in order to fulfill the vision of one man who wants to fight back and find a cure for a rare disease.

At the age of 17, Kyle Bryant received news that his struggles with coordination and throwing during baseball were not fleeting moments, but symptoms of a rare genetic disease called Friedreich’s ataxia.

Read more HERE

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