I never did learn to ride a bike as a kid. That’s why my first ride on a recumbent trike (pictured above) at RideAtaxia Orlando in 2019 was such a big deal.

It looked funky – nothing like a real bike. It seemed like something someone who couldn’t ride a bike rode so they could say they did. Does it power itself? Do I even need to pedal? How am I going to enjoy this? All of my questions were answered that November day as I rented a Catrike to ride at the event.

My dad and I planned to ease into it and do the 4-mile trail (the shortest option), since I had never ridden that kind of bike before. The only bike I had mastered was a stationary bike in Planet Fitness, which hardly seemed comparable. But when we reached the 2-mile halfway marker where we were supposed to turn around, none of that mattered anymore. I didn’t hesitate: “Let’s keep going.”

Never had I felt as free as when I trudged along through the warm, breezy Florida trail. No worries of stumbling, tripping or hitting the ground on a bike that takes care of balance and leaves the rest to you. People on regular bikes and ones like mine smiled and cheered as I passed.

Meanwhile, I felt like I was floating on air – not because the bike powered itself or because it took no effort – but because I was relieved I had what it took to do something that was so similar to what able-bodied people were doing. It did take effort and the bike did require the power from my pedaling to burst on. I was even beginning to break a sweat, but I wanted to go on forever.

I felt accomplished as ever as I crossed the finish line to a crowd cheering me on and cameras flashing. I doubled my goal and rode 8 miles the first time I really ever rode a bike. I wasn’t just getting fake cheers because I was a disabled person who did something, I felt like I really earned the cheers that day. And that’s something I hadn’t felt in a long time – certainly not since my FA noticeably onset around age 14. It wasn’t just smile for the camera and go home; I wanted to keep doing this. I was empowered by the bike that I thought was too goofy for me to accomplish anything to be taken seriously on.

Not a year later, I was blessed by a grant from the Ataxian Athlete Initiative to receive a trike of my own. Because of my new Catrike, I COULD keep doing it. When I got my bike in the midst of the COVID lockdown, my dad and I got to it. We found several trails down by the Riverwalk in downtown Phenix City (where I am in the picture above) and some trails across state lines in Columbus, Georgia.

Riding gave me a safe and enjoyable way to stay active and keep my legs strong in hopes of keeping my mobility for as long as possible. A popular saying with FA is: “If you don’t use it, you lose it.” This bike offers a way to engage my physical abilities that beats a stationary bike at the gym or walking laps any day. For one, you’re actually getting to be outside and enjoy the beauty of the trails and see new things and new people, but like I mentioned, you’re also free of the rude effects of gravity.

With a disease that progressively snatches your abilities from you, this one added something new and beneficial to my arsenal. FA put an end to me and Dad’s games of catch and shooting hoops in the driveway, but riding bikes gave us a new activity we enjoyed doing together. Looking back after my dad passed away in June 2022, that’s something I’ll forever be grateful for. Now, my dad’s best friend, Billy Holbrook, is helping me carry on his legacy and continue riding. We have done several rides together, and he’ll be attending his first RideAtaxia with me on March 23.

RideAtaxia is a FARA event that was founded by FA patient Kyle Bryant in 2007. The event raises awareness and educates different communities about FA, raises funds for FARA benefitting FA research and clinical trials, and helps build the FA community by allowing FA patients and their families to meet. There are several RideAtaxia events held around the country each year: one in Dallas, Philadelphia, California, Chicago and Gainesville, Florida. Gainesville is the newest site, and I will be attending the ride there for the third consecutive year this year.

RideAtaxia not only helps me stay strong physically and raise money to go towards a cure, it has empowered me to punch back at FA. FA has knocked me down and made me feel helpless many times, but RideAtaxia has shown me that my response is more powerful. It takes individuals that are helpless alone and shows us what we CAN do about it, together. We can ride trikes, we can raise a heck of a lot of money and we won’t stop doing it until FA is cured.

Just last year, FA got its first approved treatment, and now the vision is a bit clearer. Step one towards a cure is completed, and it’s only going to push the FA community harder in its chase for a cure now that the train has left the station. No matter how long the journey, we will pedal on to the finish line.

Even though I have been on the treatment, Skyclarys, for the last four years through a clinical trial, progression has still made my battle with FA harder. Pedaling up hills is a lot more challenging and takes every bit of leg strength I can muster to climb to the top. I now rely on a walker full-time and can’t stand much longer than a minute without holding on to something. The disease is still running its course, even if it might be at a slightly slower rate due to Skyclarys – which I’m so thankful for.

But no matter how many up-hill battles come my way, RideAtaxia gives me hope that maybe one day my life won’t be an up-hill battle. I can find that freedom again that I had five years ago at my first ride. A “new normal” is possible, and we’re inching towards it. Until that day, I will keep on riding. When we cross the finish line in Gainesville on March 23, we wll be one ride closer to the ultimate finish line. Regardless of whether I am around when the FA community reaches the finish line, I will continue to bolster the ride to a cure for as long as I am able. Lives are depending on it.

You can help boost our journey to the finish line by donating to my RideAtaxia fundraising page at https://give.curefa.org/team/550560.