Board Director

Position: Board Director Board of Directors - Volunteer Position

About Defeat Duchenne Canada
Defeat Duchenne Canada is the country’s only national charity dedicated exclusively to ending Duchenne muscular dystrophy. Throughout our 30-year history, we have provided leadership in research, advocacy, education and family support. Our organization began in 1995 as Jesse’s Journey, founded when John Davidson embarked on a remarkable trek across Ontario, pushing his son Jesse in his wheelchair to raise awareness and funds for Duchenne research.

Today, Defeat Duchenne Canada raises approximately one million dollars annually and is proud to be the largest funder of Duchenne research in Canada. As we enter a period of strategic growth, we are committed to significantly expanding our philanthropic revenue to strengthen essential education and support programs and to advocate for equitable access to treatments and high-quality care for every person living with Duchenne muscular dystrophy across Canada.

About Duchenne Muscular Dystrophy
Duchenne muscular dystrophy is the most common form of muscular dystrophy diagnosed in childhood, affecting approximately one in every 5,000 boys. In Canada, we estimate that roughly 1,000 individuals are living with Duchenne. It is a progressive, rare genetic disorder caused by the absence of dystrophin, a protein essential for muscle function and repair. While it primarily affects males at birth, Duchenne has a profound impact on families, communities and healthcare systems.

The treatment landscape has expanded exponentially over the past decade, yet there remains an urgent need for both a cure and comprehensive, lifelong support. Access to equitable treatments in Canada continues to be a challenge, and coordinated adult care is limited for many in our communities. Philanthropic investment plays a critical role in accelerating research, strengthening care, and ensuring families receive the support they need at every stage of their journey.

About the Opportunity: Board of Directors Defeat Duchenne Canada is seeking new Directors who are accomplished in their fields and passionate about advancing our mission. Board members provide governance, strategic leadership, and oversight of our 2024-2028 strategic plan, which outlines our goals across our core pillars: research, advocacy, education and support, and community engagement.

Who Should Apply

• We welcome individuals with experience in any of the following areas:
• Clinical and/or Research Expertise in Duchenne Muscular Dystrophy (experience in pediatric, adult, neuromuscular clinical practice; clinical trials; translational or basic research related to DMD)
• Finance / Accounting (banking, accounting, investment management, private equity)
• Fund Development (major gifts, capital campaigns, corporate sponsorship, legacy giving, grants)
• Government Relations / Advocacy (knowledge of Canada’s drug review, approval, and pricing processes is an asset)
• Human Resources
  Information Technology
  Law / Legal Expertise (preferably with not-for-profit or charitable sector experience)
  Board Leadership

Defeat Duchenne Canada values diversity, equity and inclusion and sees these as essential in effectively delivering its mission. Commitment Board Directors are expected to:

• Attend five Board meetings per year
• Serve on at least one Board committee (Governance & Nominations, Fund Development, Investment, Executive)
• Act as ambassadors for Defeat Duchenne Canada, fostering relationships with key stakeholders
• Commit approximately 3–5 hours per month

This is a three-year renewable term, beginning after the 2026 Annual General Meeting on June 11, 2026.

How to Apply Please submit your CV and a cover letter outlining:

• Why you are interested in joining the Board
• The skills and experience you bring
• The personal qualities that make you an ideal candidate

Application deadline: April 17, 2026 Send your application to: Nicola Worsfold, Executive Director nicola.worsfold@defeatduchenne.ca Nominating Process

• The Governance and Nominations Committee reviews all applications
• Selected candidates will be interviewed before May 9, 2026
• Recommended candidates will be submitted to the Board of Directors for approval prior to the Annual General Meeting (AGM)
• New Directors will be formally elected at the AGM on June 11, 2026