Jesse’s Journey/Defeat Duchenne Canada

About Jesse’s Journey/Defeat Duchenne Canada

Jesse’s Journey, now known as Defeat Duchenne Canada, is a non-profit organization located in downtown London on Queens Avenue that serves Canadian families affected by Duchenne muscular dystrophy (DMD). The organization aims to support families navigating the complexities of this muscle disease, which is the most common form of muscular dystrophy and affects more than 800 boys and young men in Canada. The organization provides resources to help families find a hopeful way forward by offering information on Duchenne basics, signs and symptoms, and available testing to support early diagnosis. They also share updates on research and drug development, such as clinical trials for exon skipping and recommendations from Canada's Drug Agency regarding medications like vamorolone. Additionally, the group hosts community events like the Family Forum to provide a space for connection and learning. The organization emphasizes that knowledge is a source of comfort for those seeking answers to change the trajectories of their children's lives. They describe themselves as a support system that connects families with the right tools to ensure they do not have to face the journey alone.