Danielle Campo McLeod
National Ambassador, Muscular Dystrophy Canada
Alfred Breton-Paré
Board Member, Muscular Dystrophy Canada
Patient voices, groundbreaking research, and tireless advocacy are changing the future of neuromuscular care in Canada.
When you hear “muscular dystrophy,” you might picture a single disease. In reality, it’s part of a much larger group of neuromuscular disorders (NMDs) — rare, often progressive conditions that weaken the muscles we rely on to move, breathe, speak, swallow, and live independently.
September is NMD Awareness Month, recognizing conditions like Duchenne muscular dystrophy, myotonic dystrophy, limb-girdle muscular dystrophy, and Charcot-Marie-Tooth disease.
For Danielle Campo McLeod, awareness and advocacy are deeply personal. She has a form of spinal muscular atrophy (SMA) and waited 35 years for an accurate diagnosis. “This September marks one year since newborn screening for SMA became available across Canada,” she says. “Now, babies are tested at birth and can start treatment within their first month. This is a game-changer. For decades, families like mine faced long delays, misdiagnoses, and irreversible health changes.”
Breaking down barriers
For Alfred Breton-Paré, whose son lives with Duchenne muscular dystrophy, research and advocacy have improved care, brought promising clinical trials to Canada, and improved quality of life. “A trial gave us hope, but life with Duchenne still brings heavy costs,” he says. “Too often, what you receive depends on your postal code, not your need.”
For 70 years, alongside the neuromuscular community, Muscular Dystrophy Canada, a volunteer-driven organization fuelled by generous donors, partners, and Canadian Fire Fighters, has funded groundbreaking research, provided mobility devices, delivered vital support programs, and driven meaningful policy change. We’ve seen breakthroughs once thought impossible. But our work is far from over — now is the time to transform the future of neuromuscular care.
To learn more, visit muscle.ca.
