Action Duchenne is a charitable organization with a clear vision: a world where lives are no longer limited by Duchenne. They were founded with three core objectives: (1) develop effective treatments for all by funding research, supporting clinical trials, and campaigning for access; (2) build a community by uniting and supporting families, educating about Duchenne, and raising the profile of the condition; (3) strive for a more inclusive society promoting the importance of human equality, acceptance of disability and consistent accessibility.
Transitioning into adulthood while living with Duchenne can be a challenging and isolating time. Due to scientific advancements and new treatment options, people with Duchenne are living longer, and reaching new and unprecedented milestones. By listening to their community, Action Duchenne has found that the most impactful way they can support individuals with this transition is through face-to-face sessions, run by adults living with Duchenne, and backed up by experts.
With funding from the STRIVE Awards, Action Duchenne intends to offer six skills-based training courses over the next two years, with topics ranging from running a business, travelling and self-empowerment. These courses will be held both through online professional-led training, as well as through residential, weekend summer camps. The goal of the program is for participants to leave with improved independence, increased employability and aspirations. It is hoped that hosting these courses will also have a positive impact on the perceived “value” of people with disabilities, acceptance and social cohesion.