In memory of Elena

In November 2019, little Elena and her family participated in our studio recording for the Not So Rare campaign. Elena and her parents were so committed to our cause that they didn’t hesitate to make the return trip between Quebec City and Montreal, more than 4 hours away, to participate in our video shoot. Almost a year later, on November 21, 2020, at 8:15 a.m., Elena took her last breath. We write this article to pay tribute to this courageous

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Relaunch: Not So Rare Diseases Campaign

On November 12, Max’s Big Ride and his partners are relaunching Not So Rare campaign and petition. It was bad before. With the pandemic, now it’s worse.  People afflicted with a rare disease have to navigate an overwhelmed health-care system. Forced to endure delays for the care they need to survive and thrive. MORE THAN EVER, IT’S TIME! Nowadays three million Canadians suffering from rare diseases keep on struggling to get a proper structure in our health  system, in order

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Tiktok SMA Challenge

A challenge to save lives Yan Défossé,  father of Liam, a young boy afflicted with the disease launched the “Tiktok SMA challenge”. In short, SMA is a degenerative neuromuscular disease that causes muscles to get weak, shrink or even die. Fortunately for Liam, who is in Quebec, he is receiving a treatment that stops the progression of SMA. Unfortunately, the same treatment is not available  in all provinces, so some people have access and others do not, because Canada does

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