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Our Work

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Our Work

Since 1995, we have been dedicated to funding research and advocacy to address the immediate and ongoing needs of our Canadian families living with Duchenne muscular dystrophy. We are the only national charity in Canada who is pursuing the important yet challenging goal of eradicating this complex disorder. While we are and will always continue to be in pursuit of a cure for Duchenne, our work also includes bringing together patient families, care practitioners, researchers and community members to provide information on the latest standards of care, and advocate for timely access to  treatments and trials.

Research

For the past two decades, Defeat Duchenne Canada has built a foundation of strong partnerships with leading scientists and industry partners with the focus of improving care for individuals living with Duchenne and Becker muscular dystrophy. Our commitment to our community is to fund projects with the greatest chance of translating to clinical practice in a timely, and affordable manner.

We are Canada’s largest funder of Duchenne research, granting $14.8 million across 50 research projects to date.

Thanks to the vision and commitment of our donors, 2021 marked our largest funding year to date and we were able to grant $1.7 million towards innovative approaches to Duchenne.

Through our annual research granting process, we have attracted leading Duchenne scientists worldwide who are making the progress our families desperately need and deserve.

Every year we see a growing number of research applications. This increased interest in scientific funding is encouraging for our community because it means there is a growing commitment to Duchenne treatment and drug discovery, bringing us one step closer to finding beneficial treatments, and ultimately, a cure.

Click the button below to learn about the research we fund.

Advocacy

As the leading Duchenne organization in Canada, we’re here to connect, build understanding and awareness, and unify our voice to press for timely access to affordable treatments in Canada.

We are achieving this by:

1. Working with Health Canada, our clinicians, and manufacturers to gain access to therapies not yet approved in Canada.

2. Advocating for fast decision making to speed up access to medicines in Canada.

3. Advocating against price restrictions imposed by the PMPRB (Patented Medicine Prices Review Board) to ensure that when therapies do become available, they’re affordable for all families.

Education & Support

At Defeat Duchenne Canada, we know knowledge is power. We cultivate new knowledge and the sharing of knowledge via education and support programs for young adults, parents and family members. We also partner with health care professionals to help enhance patient care. Our goal is to provide valuable resources for our Canadian community and we are passionate about fulfilling this aim every single day.

We have delivered five Family Forums in partnership with the following neuromuscular clinics across Canada: 

From 2019 to today, 255 families have attended our national Family Forums.

218 pediatric and adult health care professionals attended our Canadian Conference in 2021.

We have 70 presentations and webinars as a virtual resource on our YouTube channel.

As a registered charity, our work is only made possible by our generous donors and supporters. Learn more about how you can join the mission to defeat Duchenne.