The 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. 

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.

But 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. 

Blazin' New Trails

By Joni Moore
2017 Recipient of the Ataxian Athlete Initiative (AAI)

In the years before I learned about the Ataxian Athlete Initiative, in an effort to remain safe while being active outdoors, I had owned and ridden an adult recumbent tricycle that had two speeds: stop and go. So when I was awarded a 2017 AAI grant and received my Catrike Trail with its 10 speeds, I was prepared to take on terrain that I never would’ve dared to before.

On the first afternoon with my new trike, I took it for a short ride on the streets around my neighborhood, just to get a feel for it. I was amazed when I glanced at my phone and realized that I had gotten up to 10 miles per hour with very little exertion. To give you a comparison, I had ridden my previous trike for years and had maxed out its very limited capabilities at 8 mph…at least its safe-operating capabilities (foolhardy downhill rides excluded).

On the very next weekend, I rode my Catrike Trail to one of the more challenging paved rides in the area. With its climbing hills, sweeping valleys, and curvaceous pathways, this park had defeated me many times before on my old trike, but I was finally ready for a rematch. I started off cautiously, but it only took me about five minutes before I was riding those hills and hugging those curves as if I were on a rollercoaster! After I had ridden all of the paved pathways, I decided to take my trike off-road. I traversed up and down the rolling green hills and zigzagged across a bed of fallen needles between several large pine trees. I felt strong, empowered, and unstoppable. It was the closest I had felt to the freedom and excitement of cross-country running since my post-symptomatic abandonment of the sport 22 years ago. I was determined to make this the beginning of my explorations and curious wanderings about northern Wisconsin and Minnesota. 

One of the first things someone with Friedreich’s ataxia notices when they start to show symptoms is trouble walking, or difficulty with coordination and balance.

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