Julie Vallier said she was in shock as her doctor broke the news that after years of tests, her medical diagnosis was Friedreich’s ataxia, a life-shortening, degenerative neuromuscular disorder.
“I thought, ‘OK, what is that?’ I had never heard of it. Then he said there is no treatment and no cure. I could see his lips move, but I couldn’t hear him,” Vallier said.
On July 21, Vallier was among the 300 people who traveled to Central Park in Channahon to ride one of five cycling trails as a part of a FA research fundraiser rideATAXIA Chicago. The event had 50-mile, 27-mile, 12-mile and 4-mile routes. This was the eighth time that race founder Kyle Bryant has held the event in Channahon.
Bryant was diagnosed with FA as a teen after struggling with coordination and throwing accuracy while he played baseball. He took to the road with his father and completed a 59-day bicycle ride in 2007 from San Diego to Memphis, Tennessee. Along the way, they created awareness and raised funds for FA research and sparked the creation of events around the country to support FA patients and research – and rideATAXIA was born.
The goal this year was to raise $150,000. They surpassed that goal by reaching $162,133 in donations among rides at six U.S. locations.
“When it started it was a few families. We tried to get the word out to the public and we raised about $60,000 the first year. The growth specifically in this location has been outstanding,” Bryant said.
Channahon Mayor Missey Schumacher welcomed the group before the 12-mile ride, saying the ride has made her think about accessibility of the trails for those with a disability and how to change that within the village.
The long-distance, 50-mile cyclists left the park at 7:30 a.m., followed by the 27-mile riders, then the 12-mile route participants. The final groups pedaled off at 10 a.m. to take either a 4-mile ride around the surrounding neighborhood or the park itself.
“This location is close enough to the city where we can get some of that population, and it’s beautiful out here,” Bryant said. “The I&M canal trail is very convenient for all of our riders who normally don’t ride on the road, the community has been welcoming,and the police department and [the mayor] have all been incredible.”
Ron Bartek, co-founder and president of Friedreich’s Ataxia Research Alliance said about 5,000 people in the U.S. have been diagnosed with FA.
To learn more about Friedreich’s ataxia, visit curefa.org.