Kyle Brown: Breaking the Rules of ALS

I’m a rule breaker,” Kyle Brown says. “I think bending the rules is a good thing.” A successful age group triathlete and lifelong cyclist, Brown was diagnosed with Amyotrophic Lateral Sclerosis (ALS) in July 2021 at the age of 51. The terminal diagnosis gave him a mere 6-18 months to live but Brown has never been a rule follower and his way of living with ALS included qualifying and competing at the Ironman 70.3 World Championships.

Brown, who was a domestic professional cyclist in the United States, first found triathlon thanks to an ex-girlfriend. “One relationship lasted, one didn’t,” he jokes. He had the cycling down, running was a “natural” movement, but swimming was more of a challenge. “I have never swam before so it was comical when I started. It was more me drinking pool water,” he says. Nevertheless, Brown won his first triathlon, a local sprint, and within a year, he had progressed to
longer distances.

A decade in the sport later, while training for his first Ironman 70.3, Brown felt like his speech was slurred. Although no one else seemed to notice, Brown began to investigate. A few months later, a diagnosis of ALS was confirmed and with it a lifestyle change. Affecting the motor neurons of the brain and spinal cord, ALS causes the progressive loss of muscle control including the ability to speak, walk, and breathe. “ALS and triathlon, they don’t fit together,” Brown says frankly.  But he wasn’t resigned to give up sports or anything else for that matter. His lifestyle
change was to hit the accelerator and a few months later he qualified for the Ironman 70.3 World Championship.

In September 2021, wearing retired bib number 179 in honor of Jon Blais (the first ALS triathlete to complete an Ironman), Brown rolled across the world championship line, breaking every rule in the book when it comes to what is expected from someone with ALS.

Brown is still actively training and continues to work. There is no cure for ALS but Brown takes a cocktail of around twenty medicines and supplements everyday— “anything that might help a little bit.” The side effects of the drugs along with the physical symptoms of the disease make training difficult but it’s the realities that he and his wife face as they watch his body deteriorate that makes Brown reach for triathlon or anything else that makes him feel alive and a sense of normality.

“Triathlon has given me a great life, you know, meeting people that have helped me in this journey. It’s how I met my wife and many of my best friends,” Brown explains. Without his support system, especially his wife, Brown says “it would be a whole different story.” Despite the constant heavy presence of his disease, Brown says they always try to stay positive. “I don’t have time to cry too much. I have shit to do.”

Now as the face of ALS in the triathlon community and beyond, Brown is creating a life that not only raises awareness but continues to push boundaries, and not just in the realm of ALS. Still hopeful for the future, even if it’s beyond his own, Brown says his goal is to become “number 57.”  

“In the last 10-15 years there have 56 full ALS reversals. It’s documented. It’s not some internet story or dude with a beard in his car talking about it. It’s Duke university and a few other hospitals that have documented it. Our goal is to become number 57 or 58.”

Along with his foundation and work with other ALS support and watchdog groups, Brown’s choices challenges everyone to live beyond the accepted rules. “My diagnosis allowed me to take a step back,” he explains. “I never realized how fortunate, lucky, or blessed I am. With these people, living where I do, this country, this state, the people
I get to hang around every day, my job. I’m not wealthy by any means but I just feel like it couldn’t be any better.”

Photo: Patrick McDermott/Getty Images for Ironman