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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.

 

My 1st rideATAXIA Experience

Dillon 2On October 1st, 2013, I was diagnosed with FA; my family and I knew nothing about what it meant. This year will be the 5th year anniversary of my diagnosis, and I've been reflecting on how much I've learned.

I'm going to share specifically about my rideATAXIA experience. A year went by after being diagnosed, before my family and I went to see Dr. Lynch and his team at Children's Hospital of Philadelphia (CHOP). During our meeting with him, he told us about 2 major events in Philadelphia: The CHOP FA Symposium and rideATAXIA and their stories. He mentioned that we were too late for registration for that year and should try and plan to go next fall!

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rideATAXIA NorCal 2018 dedicated to Matt Rupel

“I have faith that I will always keep fighting. But if I fight this alone, I will fail. But if you will walk behind, I have faith that I’ll never surrender.” - Matt Rupel to a room of FA supporters at his fundraiser in 2011.

Matt RupelMatt Rupel was an expert at creating community.  He was soft-spoken at times but his wit, self-deprecation, and confidence are what drew people in; and then they were hooked, part of the FAITH Team, the Rupeloton, or Matt’s Ohana and thus supporters for the FA community.

For me, it was his determination that was so intriguing.  Matt loved to travel, and he loved journalism. One Summer while he was attending Santa Clara University, he did an internship for a company that was working on a news app.  They were located in New York City.

Matt probably never knew that this relocation to NYC might impact me but at that time I was struggling with my diagnosis and trying to figure out what to do with my future.  Hearing of Matt’s internship and his adventure helped me to realize that I didn’t need to lower my expectations for myself because of FA.

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2018 Ataxian Athlete Initiative Applications

2018AAIapp

I am very excited to let you know that the applications for the 2018 Ataxian Athlete Initiative (AAI) are online and open for you to get started!  Just visit curefa.org/aai and click on the tab that says "Apply for an AAI Grant". Once you get to the application, read all the instructions thoroughly and take your time.  Due to limited resources, we will likely not be able to fund every application and the more thought and care you put into your application, the more competitive it will be.  

The deadline for submission is June 4.  However, don't delay your research on your equipment.  One of the most important parts of the application is taking a test-ride, selecting your equipment, and describing your reasons for choosing that equipment.  It may take a few weeks to find a dealer, set up an appointment, and arrange a test-ride.  Sometimes the closest dealer is several hours away.  We mainly deal with two brands: Catrike (catrike.com) for trikes, and Top End (topendwheelchair.com) for handcycles, so check out their websites to find the closest dealer or disabled sports program for a test-ride. We would like to stick with these two strong partners, however if you have a compelling reason that you need a different piece of equipment, write about it in your application and the review committee will take it into consideration.

2018aaiapp 2

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rideATAXIA Dallas 2018

2018RADallasSpring time in Northern Texas is chancy weather-wise. You almost have to wait until the day to know what to expect; Colder than average temperatures? Sun? Snow? A cold wind? Thunderstorms? Indeed, I wondered about the weather, and how to best prepare, because my family and I volunteer at one of the rest stops. March 24, 2018, blossomed into an absolutely beautiful day to enjoy rideATAXIA Dallas, both as an outdoor volunteer and as a participant (from my interviews with cyclists).

My family and I volunteer at the half-way rest stop on the 50 mile cycling route. The rest stop is nearly 25 miles from the bicycle starting point at the University of North Texas, and sits adjacent to the lakeshore of scenic Lake Ray Roberts. FARA partners with Outback steakhouse at the rest stop. While Outback grills steak and chicken, we hand out drinks, peanut butter sandwiches, pickles, and homemade goodies. I had several cyclists comment that rideATAXIA has the best hospitality tents of any ride they’ve encountered. ( I think it was my Mom’s homemade banana bread, but it might have been the steak…) 

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