Nicola Worsfold
Duchenne parent and former National Vice President Research, Education & Advocacy at Defeat Duchenne Canada
Duchenne muscular dystrophy doesn’t just affect one person — it changes everything for families. But no one has to face it alone.
For 1 in every 5,000 boys, a Duchenne muscular dystrophy diagnosis will rewrite their future. Though it’s rare, this genetic disorder has a profound and lasting impact on the children and families it affects.
Duchenne is a progressive neuromuscular condition caused by a lack of dystrophin, a protein essential for muscle strength and function. Over time, muscles, including the heart and lungs, will weaken, leading to mobility loss, life-threatening complications, and, ultimately, premature death. But Duchenne doesn’t just affect muscles — it affects entire families. Every diagnosis places enormous emotional, physical, and financial pressure on the people who love and care for their child.
More than a diagnosis: living the Duchenne journey as a family
“There is unsurpassed devotion that comes with caring for your child with Duchenne.” says Nicola Worsfold whose son is living with the disease. Duchenne impacts siblings, grandparents, aunts, uncles, friends and colleagues all of whom provide vital support and care to the family unit.
This September, Defeat Duchenne Canada is honouring the family behind every diagnosis. As part of Duchenne Awareness Month and World Duchenne Awareness Day (September 7), families from across the country are sharing their stories to show their strength in every special moment, every hospital visit, every late-night worry, and every shared moment of hope.
“Duchenne doesn’t just affect muscles — it affects entire families.”
A national movement to defeat Duchenne
Founded in 1995, Defeat Duchenne Canada is the country’s only national charity dedicated to ending Duchenne. The organization funds world-class research, advocates for timely access to care and treatment, and supports families at every stage of their journey.
Here’s how you can make a difference this Duchenne Awareness Month:
1. Light it red: Help shine a light on Duchenne by requesting that local landmarks and monuments in your community illuminate in red on or around September 7, in recognition of World Duchenne Awareness Day.
2. Spread awareness: Use your voice on social media to show your support. Share content from @DefeatDuchenne or create your own using examples and templates from their website. Remember to tag @DefeatDuchenne and use the hashtag #WDAD2025
3. Support the cause: Every donation makes a difference. Your support helps fund life-changing research, advocacy, and family care programs across Canada.
“Duchenne demands daily courage and quiet strength – both from our children and us as parents who never stop fighting for them,” says Nicola Worsfold, National Vice President Research, Education & Advocacy at Defeat Duchenne Canada. “No one should take this on alone, together, we can turn that strength into change.”
Visit defeatduchenne.ca to share your story, subscribe for updates, and join the fight to defeat Duchenne.
