When Elizabeth Ouellette’s son Johan Bouchard was 7, she noticed that he seemed to have trouble gripping the monkey bars. And he seemed to have trouble holding a pencil.
She was also bothered that he seemed tired a lot.
Ouellette was shocked by her son’s diagnosis – Johan had CMT, or Charcot-Marie-Tooth.
“We were dumbfounded,” she said. “We didn’t even know what that meant.”
She soon learned that CMT is a progressive disease of the nerves that causes muscles to atrophy. So far, there’s no cure, but the Ouellettes aim to change that.
From 8 a.m. to 3 p.m. on Aug. 25, the family is sponsoring the sixth annual Cycle (and Walk!) 4 CMT at the Old Lantern in Charlotte.
There will be bike rides of 3, 6.5, 15, 25 or 40 miles and walks of 0.25, 0.5, or 1 mile. To register go to cycle4cmt.com.
Moved to stop CMT
Although Elizabeth, her son and her husband live in California, she is from Burlington and a graduate of Rice High School and UVM. They visit Vermont often.
Her brother, Johan’s uncle Chris Ouellette of Shelburne really enjoyed hiking, biking and snowboarding with his nephew. As Johan’s ability to participate decreased, Chris’ distress increased.
“We always used to vacation with Elizabeth and Johan and his father Gilles Bouchard. Over the years, Johan would be more and more exhausted. Over the years, Johan would spend more and more time in the room,” Chris said. “In 2014, it really hit me that I wanted to hold this event. I wanted to make sure that we raised money for research to help people with CMT.”
“Chris could no longer do these things with his nephew, and he met more people with CMT,” Elizabeth said. “My brother Chris is very unique because he said ‘How can I give back?’ So, he started the Cycle (and Walk!) 4 CMT in Charlotte.”
The first year they had less than 50 people, Elizabeth said. This year they expect 175-200 participants.
If they meet this year’s goal of $200,000, they will have raised $1 million in six years for CMT research.
“We have a real, real chance that we can stop the progression of the disease because of new therapies that have given us the opportunity to explore CRISPR, gene editing and gene therapy,” said Elizabeth Ouellette. “Worldwide, CMT is more prevalent than MS (multiple sclerosis). Everybody knows about MS, but nobody knows about CMT.”
Almost 3 million people in the world have CMT, and one in 2,500 people in the United States, she said.
Chance to meet others with CMT
Both Elizabeth and Chris Ouellette said the success of their event is a testimony to Vermonters and their passion for giving back.
The event will be successful even if someone doesn’t donate, Chris Ouellette said, because it raises awareness about CMT. And it gives people with CMT the opportunity to meet others with the disease.
They have people coming from states including New York, New Hampshire and Massachusetts to share their stories of dealing with CMT. “It helps bring the CMT community together,” he said.
Also, coming to the event will be former cycling champion Anthony Zahn from California.
In his freshman year of high school, Zahn played football and wrestled, but he was having trouble with running.
“I decided that I really liked biking and got out of football and wrestling,” Zahn said.
But he still couldn’t figure out why his knees and ankles seemed so weak – until he was diagnosed with CMT.
CMT is a neurological disorder where nerves die. When nerves are no longer stimulating muscles, they atrophy. Usually, the first parts of the body affected are the feet and legs. It then progresses up the hands and arms. Eventually, it can affect breathing, Elizabeth Ouellette said.
Inspired by Greg LeMond, who was the first non-European to win the Tour de France (1986, 1989, 1990), Zahn decided that he would be the first person with CMT to win the Tour de France.
At his first race in 1990, he took third place in his age group. He raced until in 2005 and did well, often placing in the top three, but he didn’t qualify for the Tour de France.
After almost 15 years of cycling in standard races, he was in a bike race where the racer behind him kept shouting about his skinny legs.
After the race it turned out the rider behind had muscular dystrophy and was trying to qualify for the Paralympics. Zahn said that it was the first he had heard of the Paralympics.
“When I was 14, I was full of piss and vinegar,” Zahn said. With the perceived invincibility of youth, he had just decided to ignore his limitations.
“It took some time to adjust to acknowledging my disability,” he said.
When he acknowledged the physical limitations imposed upon him by CMT, he found success in the Paralympics. He excelled at the longer races.
“I’m more of a diesel engine than a drag racer,” said Zahn. “It takes me a while to get up to speed, but once I’m there, I’m good.”
He won a bronze medal in the time trials, a longer race against the clock, at the 2008 Summer Paralympics in Beijing, China.
Although he is a cycling coach, Zahn said he no longer races but he still rides casually, a decision he is very happy with.
Chris Ouellette said organizing the Cycle 4 CMT event is very labor intensive. For many years he has told his sister that would be his last year.
Riley Ashe has CMT and has attended the Cycle 4 CMT event for the past three years. Riley’s CMT has progressed so much over the past year, he has virtually lost the ability to walk independently, even with his leg braces.
“When you see his face, it’s so appreciative and thankful,” said Chris. “Two years ago, he walked over to me and pulled on my shorts and said, ‘Chris, I heard you won’t do this anymore.’ I broke down and I said, ‘We will continue to do this.’”
Elizabeth said that she was the maid of honor in the wedding of a 29-year-old friend with CMT. Her friend has to wear leg braces and now she has breathing difficulty because it has affected the muscles of her diaphragm.
“She can’t cough,” Elizabeth Ouellette said. “She has a machine that she uses every morning to clear her lungs. If she has a cold, she ends up in the hospital. We’ve got to stop the progression, so she won’t die of this disease.”