Our Story | Founded by families, built for every Canadian living with TS

In 1976, Canadian families who had watched their children be dismissed, misdiagnosed, and misunderstood realized that their voices were stronger when they brought their advocacy, support and voices together under a national mandate. Together, they founded the Tourette Syndrome Foundation of Canada with a clear and urgent purpose: to create the national voice that Canadians with TS never had.

In living rooms and community halls from coast to coast, parents of children with TS have come together not because there was an easy path forward, but because there was no other choice but to learn and build together. Their children were being labelled as disruptive, defiant, or disturbed. Doctors across the country offered little guidance. Schools had none at all. What the founding families and so many others who have worked with Tourette Canada understood was that people living with TS deserve support, dignity, and a community that understands them.

50 years on, Tourette Canada has evolved into a volunteer-driven and nationally connected education and advocacy charity with programs designed to reach families in every corner of this country.

The Trek is the lifeblood of this organization.

By 2009, local volunteer groups across Canada were running on empty. Small, dispersed pockets of dedicated families and supporters were shouldering the full weight of fundraising on their own, organizing bake sales and local events while simultaneously trying to be a lifeline for their communities. 

The Trek was both the solution to that problem and a way to galvanize membership nationally. By bringing dispersed communities together to participate in the same event and a shared purpose, it transformed isolated local efforts into a unified national movement. 

Volunteers in Victoria and volunteers in St. John’s were suddenly part of the same story. 

Working together, the cumulative impact was dramatic. The Trek didn’t just save volunteer fundraising from burnout; it built the strong foundation needed to sustain and grow the organization for the last 17 years. 

The true impact of the Trek, however, was deeper and harder to measure. For many families, the Trek was the first time they had ever stood in a public space, in a crowd, wearing the words “Tourette Syndrome” proudly, many in teal, the official colour of Tourette Syndrome awareness. 

Those who live with Tourette’s Syndrome found connection and learned in the proudest and most supportive way possible that they are not alone and they do not need to be invisible.

The bold colours and smiles helped recruit new volunteers, attract new members, and, over time, gave rise to today’s Community Council model, where local leaders across Canada run year-round support without needing a physical office or a large board. 

The Trek for Tourette was and remains fundamental, a catalyst that has transformed and sustains the modern Tourette Canada.

Help guide the kite

Our logo is a soaring kite, chosen with as much thoughtfulness and intention as we put into our work every day. A kite’s flight is never a perfectly still line. It dips, dives, and rises with the wind. The wind is the unpredictable, sometimes forceful neurological reality of TS. The kite is the life lived with it, most powerful and most beautiful precisely because of the wind it faces, not in spite of it.

But a kite cannot fly without a string. The string is Tourette Canada’s national community of families, supporters, medical professionals and volunteers, and the programs we build together. We exist to hold that string for every Canadian who needs it.

Tourette Syndrome Awareness Month runs from May 15 to June 15. The Trek, held on the last Sunday of May, sits right at the heart of this important month. When you put on teal and trek through a park, a trail, or your own street this May 31, you’re not just fundraising. You’re part of a movement that has been slowly, steadily changing how Canada understands a condition that affects roughly 1 in 100 Canadians. You’re part of 50 years of families refusing to stay invisible.

Every movement forward helps pull the string. We all pull together, and the kite not only finds lift but stays aloft.

Four ways to show up this May