Charly, her partner Tony, and Richard (director)
From Ottawa to Percé, the team will cross the Quebec countryside covering 30,000 m of elevation gain, with 82% of the trails unpaved.
are currently diagnosed in Canada, and thousands more are waiting to be diagnosed
a feature-length version for television, and a shorter one for film festivals
”Passionate biologist, adventure guide, athlete, artist and storyteller, my life is a subtle blend of nature, ecology, outdoor sports, travel and human interaction. It has always been grounded in movement. And yet… 3 years ago, everything changed. Intense back and pelvic pain grounded me. I was diagnosed with Axial Spondyloarthritis (SpA), a chronic inflammatory autoimmune disease that attacks the spine and pelvic joints, causing acute daily pain that makes even the simplest movements difficult, and can lead to disability.
I never thought walking or running would ever be a challenge. The pain is now present with every movement. My emotional wellbeing has plummeted, and my difficulties in day-to-day life have taken their toll on the people around me. I feel lost. But despite it all, I hang in there. Movement, though it may be painful, is the key to a possible remission, combined with the right biologic therapy.
If I can’t walk for long, I can ride my bike. To come to terms with illness, I felt the need for a pilgrimage of reconnection and awareness.
Because the bravest people are often the ones who fight battles we don’t even know we’re fighting. So, I embarked on a mission off the beaten track, in search of my new potential and to show that it’s still possible to achieve great things. To understand how I can adapt to this new burden and make it lighter. “
Show that movement and the outdoors are valuable remedies for autoimmune diseases;
Inspire the community, and promote physical and mental health;
A national fundraiser in support of the Canadian Spondyloarthritis Association, to help thousands of Canadians affected by autoimmune diseases.
Charly will be accompanied by her partner Tony, an adventure guide, and Richard, a filmmaker and photographer friend who will document their adventure in a film for festivals and television.
Axial and ankylosing spondyloarthritis (SpA) is an autoimmune disease affecting mainly the spine, and afflicting millions of people worldwide. It can have devastating effects on quality of life. It is more common than multiple sclerosis (MS) and amyotrophic lateral sclerosis (ALS), and often strikes people in the prime of their lives. Even athletes like me, who live at 100,000 miles an hour.
Yet most people have never heard of it. Because it’s almost invisible and, above all, very unknown. But the lack of awareness among the public and among health professionals comes at a high cost. It can take 7 to 10 years to receive the right diagnosis of SpA, and sometimes longer to find the right treatment. Those affected suffer greatly. Follow-up is long and the treatments very costly. This disease affects over 500,000 people in Canada alone.
Patients living with axSpA have to cope with the difficult realities of a chronic disease, the impact of delayed diagnosis, medication and treatment, and the psychological burden of the disease.
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