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Max's Big Ride

Hope For Children With Duchenne

In 2013, the Sedmihradsky family’s world came crashing down. Their son Max, 2 years old, was diagnosed with Duchenne muscular dystrophy (DMD). The news was devastating, beyond words, for Andrew and Kerri, Max’s parents. DMD is a rare disease, affecting mostly boys (1 in 3,500) and sometimes girls. There is no cure, and this degenerative muscle disease generally leads to a premature death, when young adults with DMD reach their 20’s or 30s. DMD is basically watching your child losing strength day after day.

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RQMO

Caring for People with Rare Diseases

In the early 2000s, Gail Ouellette was touched by the story of a family whose little girl suffered from a very rare bone disease. As a genetic counselor, her role was to educate people about diseases. In the case of this little girl, who had a disease with a complicated name, her research found very little information to give the family. Throughout her years of practice, she learned that most people with a rare disease are alone in their struggle with access to very few resources, especially in French.

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We Don’t Want To Disappear.

Please sign our petition and tell our government that Canada needs a national strategy for rare diseases.

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