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.
Last weekend, I did something for the 10th time that I never imagined doing even once. I signed up Team Kendall for the annual fundraising event rideATAXIA in the hopes that I can contribute enough to tip the scales to save my life.
For the 10th time, I will raise awareness about Friedreich’s ataxia (FA), the cruel disease that haunts my every movement, steals my joy, complicates everything I do, unfairly defines me, and continually breaks my heart. I will campaign for money donated in my name for the sake of funding lifesaving clinical research. I will pray that these funds back the pharmaceutical company that develops the next FA treatment so that I can slow, stop, or even reverse my symptom progression.
While there are so many positive aspects of rideATAXIA, I’d be remiss not to speak to the heavy burden that this annual event places on my heart. While fundraising is important, I deeply loathe begging for money for a disease that I despise even more. In the months leading up to the event, I must talk, post, and think about FA even more than I already do. I have to humble myself even further and ask for even more help than I’m already forced to do daily.
It is draining and always brings up a complicated mix of feelings. I feel guilty when my friends and loved ones donate their hard-earned money to disease research, but I also feel so loved, seen, supported, validated, and cared for. Every donation, no matter the size, feels like a hug. It’s like people are saying, “You’ve got this, Kendall. We’re in this fight with you.”
The Friedreich’s Ataxia Research Alliance (FARA), a nonprofit that hosts rideATAXIA, has the tagline, “Together, we will cure Friedreich’s ataxia.” I borrowed that tagline when I built Team Kendall because I truly believe it.
That’s why I continue to pour my all into rideATAXIA year after year, and why I write columns for Friedreich’s Ataxia News week after week. It makes me feel like I’m actively working toward a better future for the entire FA community, which is full of people fighting just as desperately as I am.
rideATAXIA reminds me that I am not alone. When my village shares my story, donates to Team Kendall, or shows up at the ride, it is a visual and tangible representation of their encouragement and support, proving that even though I’m the one physically battling cruel, progressive FA symptoms, I am not battling them alone.
When I see other teams raising more and more, day after day, I can’t help but feel hopeful. Maybe that latest $75 will be the final amount needed to fund a radical new treatment idea.
When I see fellow FA patients vulnerably sharing their stories — good, bad, sad, hopeful, and hard — it reminds me that I’m not the only one facing cruel symptoms day after day. Because FA is so rare, I only see other FA patients in person during rideATAXIA weekend. Knowing that others are fighting with me adds passionate fuel to my fire. Curing FA doesn’t rest solely on my shoulders; there’s a whole community out there fundraising in the humble hopes of achieving that goal.
As Ron Bartek, FARA president, director, and co-founder, said, “Acting alone, there is very little any of us can accomplish. Acting together, there is very little we will not accomplish!”
“Our God is a God who strengthens and encourages you. May he give you the same attitude toward one another that Christ Jesus had.” — Romans 15:5
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