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 — FA.
“I thought, okay, 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 the FA research fundraiser rideATAXIA Chicago. This was the eighth time that race founder Kyle Bryant held the event in Channahon.
Bryant was diagnosed as a teen after struggling with coordination and throw 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. 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 — rideATAXIA was born.
The goal this year was to raise $150,000, and exceeded that goal by reaching $162,133 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. on Sunday, followed by the 27-mile riders, then the 12-mile route participants. The final groups pedaled off at 10 a.m. to either take a four-mile stroll 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 its 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 (FARA) said roughly 5,000 people in the United States have been diagnosed with FA, a debilitating, life-shortening, degenerative neuromuscular disorder. Symptoms include loss of coordination in arms and legs, fatigue, vision impairment, hearing loss, slurred speech, aggressive scoliosis, and serious heart conditions.
In 1997, Bartek was told his 11-year-old son Keith had FA.
“I knew he was going to get sick fast, there was no cure or treatment,” Bartek said.
Bartek noticed that there was not one specific organization focused on FA itself, but some larger organizations included ataxia under an umbrella.
“That’s when I knew we needed an organization designed to support those with FA. My wife and I lived in Washington D.C., both worked on Capitol Hill as congressional staff. We knew we needed to do something about this and spent a year to figure out who else was out there,” Bartek said.
Collaboration began between five other parents, one adult patient and three scientists who were the lead in their fields with FA. A founding board was created and the FARA organization was incorporated in 1998 and acceptance as a 501 (c)(3) followed.
FARA secured a grant from the National Institutes of Health for the world's first international conference for FA. Bartek said relationships were built, however, drug companies did not show up at first because the disease was so rare. However, this year's national conference will host 450 people, including reps from three dozen drug companies.
FARA has grown the world's largest patient registry, with 3,000 members. Trials have taken place where patients are re-examined after 18 months to measure progress. An FA drug rating scale was created for the FDA, patients have participated in clinical trials, and a natural history database was formed.
Bartek devoted his life to find a cure for those who battle with FA. His son, diagnosed at 11, passed away at age 24.
“He thanked his mother and me before he died, he said thanks for working so hard. He knew it wouldn’t be in time for him, but he knew we would keep it up and maybe find a cure in time for his buddies,” Bartek said.
While a cure has not been found, Bartek said within the next year a trial with Reata Pharmaceuticals could possibly produce the first treatment. Three drug companies have also joined the sponsorship for rideATAXIA.
“The cavalry has mounted, this year could go down in the history books of FA,” Bartek said.
To find more about FA, visit www.curefa.org.