On Thursday, June 11, 2026, the Defeat Duchenne Canada community came together online for our 2026 Community Annual General Meeting (AGM). Guided by a shared commitment to a future without Duchenne muscular dystrophy, the meeting provided an opportunity to reflect on progress in 2025 and look ahead with renewed determination.

Read & Share: 2025 Impact Report

All of the highlights below can be found in our 2025 Impact Report, and we warmly encourage you to read and share it with your friends, family and colleagues.

Highlights:

A Poem from Nikol

We were honoured to be joined by Duchenne mom, Nikol, who shared a deeply personal poem with our community during the event. Thank you, Nikol, for bravely sharing your story in such an honest and meaningful way. Like so many families in our community, your words ground us in why this work matters and who we are here for each day.

30th Anniversary & John’s Walk

Defeat Duchenne Canada’s story began in 1995, when founder John Davidson first pushed his son Jesse across Ontario to raise awareness and funds for Duchenne muscular dystrophy, an act that sparked a national movement that continues today.

To mark our 30th anniversary, John returned to the road once again, walking 30 kilometres along his original St. Thomas to London route. It was a meaningful and emotional journey, bringing together long-time supporters and new community members in a shared moment of reflection and hope. The walk raised more than $55,000 in support of our ongoing mission to advance research, advocacy, education, and family support across Canada.

Highlights from Year Two of Our Five-Year Strategic Plan

The event featured an update on progress within the second year of our five-year strategic plan:

Research

Research remains at the heart of our mission. This year, we surpassed $20.3 million invested in Duchenne research across more than 85 projects worldwide.

In 2025, we invested over $1.2 million and launched our 2026 grant cycle, receiving 20 applications from around the world. Following a rigorous review process by our research and family committees, three new projects were approved, including work focused on improving the safety and delivery of gene therapies, addressing social challenges such as bullying, and advancing treatments that support critical outcomes such as cardiac health.

While research progress brings growing hope, it also reinforces the urgency of our advocacy efforts to ensure these therapies are accessible to families in Canada.

AGAMREE®

October marked a significant milestone with Health Canada approval of AGAMREE® (vamorolone)—the first treatment for Duchenne muscular dystrophy in Canada.

This achievement was made possible through the collective efforts of our community: donors who invested in early clinical trials, clinicians who led and supported the research, families who participated in studies, and advocates who ensured our voices were heard. It is a powerful example of what is possible when we move forward together, while underscoring that our work is far from over.

Advocacy

With treatment now approved, advocacy is more critical than ever. Approval is only the first step toward equitable access across Canada.

Over the past year, we strengthened national advocacy efforts through webinars, tools, and training to support families in sharing their voices. We also represented the community through submissions to the Canadian Drug Agency (CDA) and INESSS, ensuring lived experience informs reimbursement decisions.

We are deeply grateful to the families who shared their stories and to our volunteer Advocacy Committee for their ongoing guidance and leadership.

Community Engagement

Community engagement continued to grow in 2025, strengthening a national network of families, donors, researchers, and health care partners.

The Walk to Defeat Duchenne brought together 33 teams nationwide and raised $192,000, including an outstanding contribution of more than $29,000 from Drew Bonin’s “Jacob’s Journey” team.

We connected with over 500 families, representing 27% year-over-year growth, and continued working toward reaching all 800–1,000 families living with Duchenne in Canada.

Awareness efforts also expanded through storytelling, annual giving, and Giving Tuesday, which raised more than $182,000 during the holiday season. During Duchenne Awareness Month, 24 landmarks across Canada were illuminated in red, amplifying the stories shared by families nationwide.

Education & Family Support

Education and family support remain central to our mission.

The 2025 Toronto Family Forum, delivered in partnership with Holland Bloorview Kids Rehabilitation Hospital and SickKids, welcomed 286 in-person and virtual attendees for a weekend of learning and connection.

New programming for children and teens was introduced for the first time, alongside an Expert Expo connecting families directly with clinicians, researchers, and industry partners.

We also launched updated emergency care resources to ensure families have immediate access to critical, life-saving information when they need it most.

Welcome New Board Members & Thank You to Outgoing Members

We extend our heartfelt thanks to our outgoing Board members for their service, commitment, and invaluable contributions, and we are pleased to welcome our new Directors to the 2026 Board of Directors, whose leadership, expertise, and dedication will help guide the organization into its next chapter.

Departures

• Dale Cheeseman – six years of service
• Dr. Hanns Lochmüller – six years of service
• Dr. Lisa Hoffman – 15 years of service

New Board Members

Perry Esler
A respected community leader with more than 25 years of experience in philanthropic fundraising and non-profit leadership. As former CEO of Defeat Duchenne Canada, Perry brings foundational knowledge of the organization, deep governance experience, and a long-standing commitment to advancing the mission.

Ella Korets-Smith, MSc, MBA
A company builder and biotechnology entrepreneur with deep experience in cell and gene therapy, biologics, immunotherapy, and regenerative medicine. She brings a strong scientific foundation, board-level governance experience, and a commitment to advancing innovation that improves health outcomes and strengthens Canada’s biotechnology ecosystem.

Dr. Laura McAdam, MD
A pediatrician at Holland Bloorview Kids Rehabilitation Hospital, clinician-investigator, and physician leader specializing in rare genetic and neuromuscular conditions. Dr. McAdam leads interdisciplinary care for children and youth with neuromuscular conditions, including Duchenne muscular dystrophy, and serves as Associate Professor of Pediatrics at the University of Toronto and Clinician Investigator at the Bloorview Research Institute.

Dr. Leandra Wells, PhD, MBA
A pharmaceutical executive and healthcare leader with expertise in commercial strategy, brand development, AI and organizational transformation, and strategic planning. Dr. Wells has served on multiple boards and committees, including Virotek BioSciences and Mount Sinai Fertility Clinic, bringing strong governance and sector-wide insight to her work.

Board of Directors (2026)

Officers

• Brian Atkinson, Chair
• Richard Beatty, Treasurer
• Niki Kemeny, Secretary
• Natalie Rumscheidt, Vice Chair

Directors (Alphabetical by Last Name)

• John Davidson
• Perry Esler
• Ella Korets-Smith, MSc, MBA
• Dr. Laura McAdam, MD
• Eric Morden
• Kadey Schultz
• Tushar Shakya
• Doyle Steinke
• Tom Cappelli
• Bonnie Wooten

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.