I am a freelance columnist for Friedreich's Ataxia News. I was recently published on my column, My Darling Disability, and I wanted to share it here, too. You can either read it by following this link, or just keep scrolling below.
Friedreich’s ataxia (FA) is a big, overwhelming disease. And with it being so rare, it can feel very isolating. My immediate family and I had never even heard of FA until my diagnosis in 2013. When we started telling family and friends about this disease, my aunt remembered seeing a news story about a beautiful young lady with FA who was training and fundraising for a bike ride.
My family clung to this like a life raft. There were more people like me out there! And they are DOING SOMETHING to fight this disease. We immediately knew we had to get involved.
I got in touch with the phenomenal folks at the Friedreich’s Ataxia Research Alliance (FARA), and they told us all about rideATAXIA. rideATAXIA is a nationwide program of bike rides that welcomes people of all abilities to ride and raise funds for FARA’s mission to treat and cure FA through research. It was a huge relief to channel all of our preoccupation, energy, and fears into a productive event. We could actually do something proactive, instead of just sitting and dreading FA taking over my life.
I was beyond blessed to have an incredible network asking, “What can I do to help?” The ride was a great answer. People could ride with me, donate, or just spread the word. We had a rallying point. I knew that rideATAXIA was perfect because I wanted to do something WITH my friends and family, not just sit and watch. And this was something I could actively participate in with a recumbent trike.
My first rideATAXIA in 2014 was life-changing. I fundraised so hard and taught everyone I knew everything that I knew about FA. I was so determined to make a difference. About four weeks before the ride, I found out that I was pregnant with my son, so I was fighting for a future free of FA with even more passion. “Team Kendall” came out on top as the highest fundraising team that year!
The atmosphere at rideATAXIA is electric — it’s like a giant pep rally. Everyone there is just as desperate for a cure as you are. That brings about an indescribable bond. It is an opportunity to meet with fellow patients and build camaraderie in a supportive environment.
rideATAXIA is a productive avenue to channel my energy when FA is on my mind. It gives me such hope that there is a huge, nationwide effort to raise awareness and funds to help find a cure for FA. There are rides every few months all across the United States, so there is always some way to get involved.
Last, but certainly not least, the support from my friends and family has absolutely changed my life. I am so humbled, and my heart is so full from all the love shown to me. Be it through generous donations, showing up and riding, or sharing my story, it all just warms my heart. So far, I have raised over $145,000. I hope that all of my supporters, riders, and donors know that they are changing my life and investing in my future. There is no greater gift than that.
Kyle Bryant, a fellow FA patient and rideATAXIA founder, said it best: “When I’m cycling, I imagine my trike is hooked up to a huge research machine. As long as I keep pedaling, the research keeps moving forward. Thank you for helping us power that research ‘machine.'”
My team and I are about to embark on our fifth annual ride. As much as I love rideATAXIA, I hope that this 2018 ride is my last. Because I hope that this is the year we CURE FA and won’t need to fundraise for scientific research anymore! Here’s hoping …