Defeat Duchenne Canada

About Defeat Duchenne Canada

Defeat Duchenne Canada is a community organization located in downtown London on Queens Ave that serves as the country’s only national charity dedicated to ending Duchenne muscular dystrophy. The organization supports boys and young men living with this life-limiting disease, as well as their families and caregivers. It describes itself as a source of comfort and a provider of tools to help families navigate the complexities of a diagnosis that causes progressive muscle weakness and organ deterioration. The organization provides leadership in research, advocacy, and support, offering resources that explain the "what, why, and how" of Duchenne muscular dystrophy. Specific services and initiatives include providing information on diagnosis, symptoms, and testing; sharing news on drug development and clinical trials, such as those from Entrada Therapeutics and ITF Therapeutics; and hosting events like the Family Forum. They also conduct advocacy work, including a joint national survey with La Force DMD and Muscular Dystrophy Canada to inform drug agency submissions for potential treatments like givinostat and vamorolone. Since its founding in 1995, Defeat Duchenne Canada has worked to ensure all Canadians affected by the disease can live long and active lives. The organization emphasizes the importance of knowledge and community connection, offering a way for families to connect with others on similar journeys. They rely on the support of individuals and businesses across the country to fund their mission of finding a cure.