Part of the personal process of accepting my Friedreich’s ataxia diagnosis was deciding to do something proactive to try to secure a better, disease-free future for my fellow FA patients. An integral part of my efforts to make a real difference is the event rideATAXIA.
rideATAXIA takes place across the country on various dates. People of all abilities are welcome to ride and raise funds for the Friedreich’s Ataxia Research Alliance, whose mission is to advance research for treatments and eventually a cure. I have participated in rideATAXIA every year since my diagnosis.
Every spring, I assemble Team Kendall to participate in the rideATAXIA event in the Dallas, Texas area. I look forward to rideATAXIA all year and work hard to make Team Kendall’s participation a success.
In November or December, I order new materials, such as banners, T-shirts, helmet decorations, tents, and other items. In January, I plan my social media and email campaigns, which I usually start rolling out in February. I also dust off my recumbent trike, air up the tires, and grease the chains to start training my body for the ride. As the date approaches, the event increasingly becomes a priority in my life.
rideATAXIA 2020 would have been my seventh time participating in the annual fundraiser. I was especially looking forward to this one because last year’s ride was rained out. Because of a severe thunderstorm that had stationed itself over the ride location the morning of the event, a “game-time” decision to cancel was made.
But the fabulous rideATAXIA planning team pulled together a stellar last-minute Plan B. We all got together indoors and caught up with fellow FA community members whom we don’t regularly see. We ate lunch and celebrated a great fundraising effort.
It was still a wonderful day, but I felt like I had let my supporters down by not actually riding in the fundraising bike ride they had donated to. I know that my generous friends and family are donating as a way of supporting my fight and investing in my future, but I still like doing something tangible and special to show my appreciation for their donations.
When COVID-19 became a reality, I watched the situation closely, as did most of the world. Our 2020 ride was scheduled for March 28, and I was cautiously optimistic that it might still take place because it was an outdoor event. However, as we learned more about the pandemic, and state and national regulations changed hourly, I suspected that it would get pushed back. Sure enough, about two weeks before the big event, the official call was made to postpone the ride until the COVID-19 situation was under control.
At that point, 95% of my donations were in. I had to disappoint my supporters once again by being unable to ride in the scheduled event to honor their hard-earned donations that they graciously had gifted to Team Kendall and the entire FA community. Of course, everyone was understanding and still happy that their donation would go to advancing lifesaving FA research, but I was still upset.
Team Kendall had just reached a huge milestone: We had raised over $200,000 for FA research since I began campaigning in 2013! That is a great achievement that humbles and excites me, and I had big plans to celebrate it. But I believed that celebrating would have downplayed the seriousness of COVID-19.
Fortunately, the ride wasn’t entirely canceled. I am in contact with the Dallas planning committee about a rescheduled event where we can still get together and celebrate a fantastic effort. The Dallas event ended up exceeding the fundraising goal of $175,000. Of that, $20,703.25 came from Team Kendall! That is extraordinary and worthy of celebration, no matter the day of the year.
On March 28, many of the team captains and registered participants, including me, went outdoors and rode around their neighborhoods to commemorate the day. We donned our Team Kendall and rideATAXIA gear and proudly rode 6 miles.
I will keep my team updated about the new 2020 rideATAXIA plan, but until then, I am ready to make 2021 our best ride ever!
As in life with a progressive degenerative disease, things don’t always go as planned. We take it all in stride and hope to find a way to keep moving forward, celebrating life when we can.
To read about my previous rideATAXIA events, check out my blog.
Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.
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