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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.

 

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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2018 rideATAXIA SoCal

2018rideATAXIA SoCal

On February 24, 300 bikers lined up on Bolsa Chica State Beach to take on one of the most beautiful routes ever. With perfect weather and the sun shining, the ride itself was extremely enjoyable. Whichever route you ended up choosing, walking or biking, it was serene. The warmth of the sun and smell of the salt water was and incredible companion while completing the ride. Needless to say, it was a typical Southern California day.

There were so many people there besides the participants. The group was filled with friends, family, FA patients and I even met some folks there who just wanted to support. We had FA families fly in from all over including: Florida, Pennsylvania, Oregon, Washington and Philadelphia just to name a few. Outback Steakhouse and Lazy Dog Restaurant were there to give us all fuel at the end of the beautiful ride so it was pretty awesome… and delicious.

Since the route was extremely flat and pretty easy, during the ride was almost another social event. We were coasting along, passing by one another, having conversations, taking pictures, laughing and cheering one another on. I had a blast biking next to some of the best people and it really was one of the most enjoyable events I have ever been to. 

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2017 rideATAXIA Orlando

rideATAXIAO2017The 7th Annual rideATAXIA Orlando was held on November 12, 2017 at Waterfront Park in Clermont, FL. This event is always near and dear to my heart because I have family in Orlando, and we been involved with it since the beginning. This year was really exciting for me; as I rode my own recumbent hand cycle. I also gave a speech as a FARA Ambassador about my personal experience with FA, the encouraging progress of FA research, and most importantly a sincere thank you to the participants of the event.

It was a FAntastic day that welcomed over 250 riders and raised over $100,000. The weather was perfect for riding…warm with a cool breeze around the lake. As usual the food from Outback and Carrabas was delicious! The menu consisted of steak, chicken Marsala, macaroni and cheese, rigatoni, broccoli, and Cesar salad. Cycle Ataxia sponsored the Orlando ride for $10,000. Created in Ireland by Barry Rice, Cycle Ataxia exists to raise funds for FA research. We were honored to have Barry and his father join us for the ride. 

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rideATAXIA SoCal 2018 Dedicated to the Memory of Chelsea Lane

rideATAXIA has become a powerful force in the effort to treat and cure FA. Hundreds of people come out to each ride to participate, challenge themselves, and contribute to the science that will treat and cure FA.

As the momentum continues to build, I am constantly reminded of the people who were there in the beginning before there was momentum to build on.

The power of community is incredible. It is awesome to be encouraged by each other to raise funds or participate in research.

ChelseaLane1But what happens when you’re diagnosed before that community has taken shape? It takes a special kind of person to stare down a dark and lonely situation and still take action.

That’s why rideATAXIA SoCal is dedicated to the memory of Chelsea Lane.

Chelsea was diagnosed with FA in the very earliest years of FARA, before clinical trials, before there was the connected and robust FA community we know today.

Chelsea was diagnosed in 1998 at the age of 5 and battled her disease daily. She eventually became legally blind and could not do any activities most of us take for granted, such as self-feeding, bathing, brushing her teeth, brushing her hair, or dressing herself. This disease robbed Chelsea of her independence, her dignity and her pride. Remarkably, despite the grim scenario painted above, Chelsea was cheerful, happy and loving.

Because of this disposition people loved to be around Chelsea and she brought happiness wherever she went. 

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