For the estimated 800+ Canadians living with Duchenne muscular dystrophy, access to accurate information, early diagnosis, and coordinated care changes what’s possible at every stage of the journey.

Ways to get involved this week:

1. Contact Local Media. Share the World Duchenne Awareness Day press package with your local media to help bring Duchenne into more Canadian conversations.
2. Light It Red. Use our letter template to ask a local landmark, monument, or business to light up red for September 7.
3. Join the Conversation. Follow us on social media (Facebook, Instagram, LinkedIn, X) and share what access means to you – every voice helps paint a fuller picture of what access really looks like.

Duchenne is rare, but no family should face it alone. When communities light up in solidarity, they help more families feel seen and supported.

Ways to get involved this week:

1. Show Your Colours. Add our Facebook profile frame or cover image and help spread visibility online.
2. Spread the Word. Share our posts and stories from Instagram, Facebook, LinkedIn, or X, or create your own using key facts from the press kit, with the hashtag #WDAD2026 and tagging @defeatduchenne.
3. Connect With the Community. Introduce yourself and share a bit about your family on our family connector page. You are not alone – meet other families living with Duchenne and share a bit about yours.
4. Register for the Family Forum. Our once-a-year national community-building event – in person and online.

Around the world, eight treatments for Duchenne have been approved in the EU and the US. In Canada, only one – AGAMREE (vamorolone) – has been approved, and it still hasn’t reached the children and young men who need it most. Access changes lives, but only once it reaches the people living them.

Ways to get involved this week:

1. Share the Gap. Share our graphic comparing the status of Duchenne treatments internationally vs. in Canada.
2. Read the Latest. Read the latest update on AGAMREE (vamorolone) and its CADTH (CDA) review process in Canada.
3. Track Givinostat’s Progress. Follow Givinostat’s progress toward Canadian approval.

Access to information takes many forms – a website with answers, a toolkit that turns concern into action, and a room full of people who understand. This week, we’re sharing these with our community!

Ways to get involved this week:

1. Explore Our Advocacy Hub. See Our Advocacy Priorities and ways to get involved after this month.
2. Make Your Voice Heard. Use our toolkit to contact your provincial or territorial elected official (MLA/MPP/MNA/MHA) — timed to the September 23 CDA committee reconsideration.
3. Register for the Family Forum. Connect with other families and our care team in person or online at our once-a-year Forum des familles.
4. Share Our Feature Story. Catch our story in Maclean’s and The Hill Times, live September 23.

Care must keep pace with longer lives. Boys with Duchenne are living longer and reaching adulthood in record numbers. In Ontario alone, the Canadian Neuromuscular Disease Registry (CNDR) estimates there are now nearly double the number of young men over 18 living with Duchenne compared to boys under 18. But at 18, they age out of the pediatric system and hit a healthcare cliff just as their needs grow more complex. This November, help us build the bridge across it.

Ways to get involved this week:

1. Get a sneak peek. As young men with Duchenne age into adulthood, care gets harder to access, and families need more support to bridge that gap. Read what turning 18 in our health care system really looks like, then donate to help young men navigate the road ahead.