On Monday, June 16, 2025, the Canadian Duchenne community gathered in person in London, Ontario, and online from across the country for Defeat Duchenne Canada’s 2025 Annual General Meeting. It was a powerful evening of reflection, celebration, and forward momentum as we marked the first year of our 2024–2028 Strategic Plan and honoured 30 years of progress in the fight to end Duchenne muscular dystrophy.
“We’ve come so far together—but we won’t stop here. This is only the beginning of what we will achieve.”
– Brian Atkinson, Board Chair
The Heart of Our Work
One of the evening’s most powerful moments came from Grade 11 student Saja Alwani, who courageously shared the story of her cousin Adam, a young boy living with Duchenne. Saja spoke about the impact of Duchenne on her family and how it inspired her to take action. She recently organized and led a fundraiser at her high school, raising nearly $1,000 to support Defeat Duchenne Canada.
“Even though Duchenne has stolen part of Adam’s childhood, it will never take his dreams away. That’s why I’m here—for Adam, for Jesse, and for every child who still dares to dream big.”
– Saja Alwani, Adam’s Cousin
Her compassion, clarity, and call to action deeply moved everyone in attendance—a true reminder of why this work matters and how the next generation is already stepping up to carry it forward.
Special Thank You to Our Board
We were also honoured to welcome four new members to our Board of Directors:
- John Davidson – Founder of Defeat Duchenne Canada, returning to continue guiding our mission.
- Kadey Schultz – A Duchenne mother and legal advocate with deep community and fundraising experience.
- Eric Morden – A young adult living with Duchenne, with a BSc in Biology and a minor in Disability Studies.
- Dr. Tushar Shakya – Health policy expert and COO of the Canadian Cardiovascular Society.
Their lived experience and professional leadership will help shape the next chapter of our organization. At the same time, we extend heartfelt thanks to our departing Board members, Ted Lindsay and Frank Desrosiers, whose decade-plus of dedicated service helped guide Defeat Duchenne Canada through transformative years.
Momentum Continues
Board Chair Brian Atkinson and the Defeat Duchenne Canada staff team shared key milestones from 2024—the first year of our Strategic Plan—and emphasized the continued strength of the community, despite a year marked by transition.
Research
The 2024 Research Cycle led to the launch of two new groundbreaking research projects resulting in a $900,000 investment in research in 2024:
- Dr. Francesco Muntoni is investigating AAV gene therapy to address brain dystrophin deficiency.
- Dr. Alain Stintzi from the University of Ottawa is exploring how gut microbiota could unlock cost-effective therapies.
Learn more about the Research We Fund.
Advocacy
We revised our approach to be more family-led than ever before, placing lived experience at the heart of our national strategy. This updated plan calls for equitable access to treatments across provinces and a stronger voice for patients at every policy table.
Education & Support
The 2024 Family Forum in Ottawa united 184 participants in person and online, featuring leading clinicians, researchers, and community voices. We were honoured to welcome Elijah Stacy, global advocate and author, as a keynote speaker.
A landmark moment came with KYE Pharmaceuticals announcing its intent to seek Health Canada approval for AGAMREE®, which could become the first-ever approved treatment for Duchenne in Canada.
Engagement
From coast to coast, awareness grew stronger in 2024:
- 27 landmarks lit red for Duchenne Awareness Month.
- Expanded our family network with a 17% increase in connections across Canada.
- A successful launch of our Family Storytelling Map, with stories spanning all the way to the Yukon.
This first year laid the foundation for what’s to come. We focused on strengthening relationships, refining systems, and making bold investments in research and advocacy. You can explore all the progress and powerful stories in our 2024 Impact Report (see below).
“This past year has been one of transformation and renewed commitment. Thank you for helping us build a future free from Duchenne.”
– Brian Atkinson, Board Chair
Thank you to everyone who made this evening so special. Together, we are a community united in hope, action, and unwavering belief in a future without Duchenne.