GRAND FALLS-WINDSOR, NL – When someone is diagnosed with a syndrome, it is automatic to seek answers.
What’s difficult is when those answers are not readily available.
A family in Grand Falls-Windsor is hoping to spread awareness and education about something close to their hearts, Tourette syndrome, by hosting the area’s first Trek for Tourette this month.
“After my son and I found out that we have Tourette syndrome, I felt completely alone,” said Tara Bannister. “There are no pamphlets anywhere around here in the doctors’ offices, there are no support groups, there is absolutely no information given to newly diagnosed people.”
Tourette syndrome is hereditary, but Bannister said she didn't know what it was until she was in her 30s, and she has no knowledge of any family members having it besides herself and her son.
The only place she had to turn for information was Google.
“After four years of coping with this alone and doing as much research as I could on my own to help my son and me, I decided there has to be more people out there like us,” Bannister said. “After all, one per cent of the population have Tourette syndrome.”
She started a Facebook support group for people in central Newfoundland and then decided to organize the Trek for Tourette in Grand Falls-Windsor.
She travelled to Toronto in January to do in-service training with Tourette Canada, meaning she is now trained to go to schools and businesses to provide Tourette syndrome in-services.
Her next step is the local Trek for Tourette, which nationally is in its 10th year and is Canada's only national fundraiser for Tourette syndrome awareness, Bannister said.
Funds raised go to Tourette Canada, a non-profit organization. The trek is a five-kilometre walk typically held on the last Sunday of March across Canada.
“My main goal is to spread education and awareness about Tourette syndrome and other associated disorders so that other people and other families don't feel so alone,” Bannister said.
Acceptance and inclusion
Due to misrepresentation of what Tourette syndrome is, Bannister said, many people go undiagnosed their entire lives.
“The walk is very important to myself and my family, and I hope that it will be important to other members of the community as well because all we want is acceptance and inclusion,” she said. “People with Tourette syndrome are generally mocked and made fun of and judged harshly.
“It's a very taboo disorder that I really just want to help normalize, because we are just like everyone else except our brain makes our body do things that we don't have any control over.”
Bannister started Wear Teal for Tourette Day as a kickoff to the Trek for Tourette. On Friday March 23, 2018, she is hoping to get as many people as she can to wear teal. She sent letters to 20 schools, mainly in the central area, looking for support. Exploits Valley Intermediate, Benjamin’s school, has agreed to participate.
The following day, March 24, the Trek for Tourette will take place in the gymnasium of Woodland Primary in Grand Falls-Windsor. Registration is at 1 p.m. with the trek beginning at 2 p.m.
“There will be lots of prizes and hopefully some food and we hope everyone will have a good time,” Bannister said. “It's not just for people with Tourette syndrome, it's for anyone in the community who wants to show their support.”
The Bannisters found out Monday evening that Benjamin’s hockey team, the Grand Falls-Windsor Peewee B Cats, is joining the trek, something that made both Benjamin and his mother very proud.
“Wow, that’s amazing,” was Benjamin’s response to the news. “I can’t believe my whole team is supporting me.”
Participants who reach a goal of $100 or more will receive a prize of a tote bag, and other prizes will be up for grabs.
Benjamin, 13, has already raised more than $400 for the trek. He put up posters and recorded a Facebook video, which has about 1,500 views.
“I am hoping to raise $500 but it would be really awesome if I could raise $1,000,” Benjamin said. “Raising money is important because the more money Tourette Canada has, the more information and awareness can be made available to other people like me.”