The 13th annual Trek for Tourette is just one week away, and it’s going virtual for the second year in a row due to pandemic restrictions.
The Trek for Tourette usually sees Canadians with Tourette syndrome (TS) and their families coming together for a 5-kilometre walkathon to raise money and awareness for the disorder, but the pandemic led the 2020 and 2021 events to move online. Last year’s trek included over 45 participants and raised $3,300, contributing to more than $30,000 that has been raised in the Muskoka trek since its inception. Shawn Forth, trek coordinator and leader of the Muskoka chapter of Tourette Canada, said the online event gives trekkers the chance to do all kinds of activities within their family bubbles in honour of TS awareness.
“You choose your own route, you choose your own activity,” Forth said. “Some people are biking, some people might be skateboarding, some people are just going to stay on their own property.”
It’s difficult having the walkathon moved online for two years in a row, Forth said, in part because Tourette Canada receives no government funding and the trek is the organization’s only national fundraiser, funding research, outreach and resources for people with TS. It’s also hard on the people with TS and their families because they’re unable to lean on each other for connection and support in the same way.
TS is an often misunderstood neurological disorder characterized by involuntary movements or vocalizations known as tics. It affects about one in 100 people, and though awareness and understanding of the disorder have started to improve, Forth said there’s still a long way to go.
“The big challenge for a lot of the families is we haven’t really seen each other face to face in more than a year because our support group meets only through Zoom,” he said. “Everyone had been optimistically hoping that this year’s trek would be able to go ahead, but it was quite clear back in February that it was going to be done virtually again this year.”
Though a trek was organized in Barrie for the 2020 and 2021 events, the Muskoka Trek for Tourette was the only one in central Ontario for years, Forth said. For the participants, the trek is like a big family reunion.
“For many years, we were drawing people from as far away as Bowmanville, Sundridge and Barrie, Washago and so forth, so we were drawing a lot of people from all over the area,” he said. “They’re not people you could see on a month-to-month basis, so it was always nice to see your sort of extended family, if you will, of other people who have the Tourette diagnosis.”
Despite the limitations, Forth hopes trekkers will show up in full force and fill their Facebook page and other social media with pictures from the event on May 30.
The event was originally held in March because the weather mirrors the unpredictability of TS, but due to the pandemic, it was moved to late May in the middle of Tourette Syndrome Awareness Month, which runs from May 15 to June 15. It’s also the perfect time to fly a kite, which ties into an important symbol for Tourette Canada.
“About five years ago, Tourette Canada changed their logo to a yellow kite and the whole idea is that every kite has its own unique journey and sometimes you fall, sometimes you soar,” Forth said. “Through the support of families and support groups and community, we want everyone with Tourette syndrome to be able to rise and soar.”
To register for the event, or to make a pledge, click here. For local participants, be sure to use the hashtag #TrekforTourette and tag @TouretteMuskoka on Facebook, Twitter and Instagram on May 30. To learn more about Tourette syndrome, visit the Tourette Canada website.