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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 …
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 …
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 …