Manalapan’s Liam Kruesi Takes on Unbelievable Challenge

This is an amazing story of a local Jersey guy, twenty-four-year-old Liam Kruesi. Liam is from Manalapan, New Jersey, but he’ll be in Florida on Sunday, August 24^th, to take part in the Fort DeSoto International Aquabike.

The reason this is notable is that Liam lives with a rare disease called Friedreich’s Ataxia, which significantly affects his balance and coordination. The disease will eventually lead to the loss of his mobility.

Liam says, “This is more than just a challenge for me, it’s a chance to show what’s possible with determination, support, and a whole lot of heart.”

The Aquabike event is a race that consists of a quarter-mile swim and a 10-mile bike ride. It’s important to mention that he will not receive any accommodations or equipment to complete the race. He is the first person with FA to compete in an Aquabike.

Liam was diagnosed with FA ten years ago when he was 14, and has been using a wheelchair for more than two years. He was unable to swim when he first signed up for the race. Now, he trains with a trike, swims nearly every day, and does weight and body weight workouts several times daily. Liam does all of this while working a full-time job as an actuary.

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He shared that he doesn’t simply want to finish the challenge, he says, “I’m competing!” He continued, “Training for this race has been transformative. I feel like I have gotten back parts of my life I had lost a decade ago with my diagnosis.”

Friedreich’s ataxia (FA) is a genetic, progressive neuromuscular disease. People with FA experience issues with balance and coordination of movement that lead to life-altering loss of mobility. Other common symptoms can include fatigue, serious heart conditions, scoliosis, and diabetes. FA is life-shortening and affects an estimated 5,000 people in America and 15,000 worldwide. Many of those affected are children.

There is currently only one treatment approved in the U.S. for individuals 16 and up, but there is no cure.

Liam is using this opportunity to raise funds for the Friedreich’s Ataxia Research Alliance. FARA is a non-profit organization dedicated to curing FA through research.

“Every mile I complete brings us closer to treatments and a cure,” he says. Support Liam on his journey HERE.

For more information about FARA, visit curefa.org.