A decade ago, a child with Duchenne muscular dystrophy was not expected to live into their adult years. Now, with improved care and science, more people with Duchenne are living longer lives. Transitioning into adulthood while living with Duchenne can be a challenging and isolated time. Action Duchenne has found one way it can support this transition is through face-to-face sessions run by adults living with Duchenne and supported by experts.
Young adult living with DuchenneI am very worried about transitioning into adult life. I want to do as much as I can in the future, but without the information at hand and right support in place I don't know how to get there.
With help from the PTC 2022 STRIVE Award, Action Duchenne intends to offer six skills-based training courses to young members over two years, with topics ranging from running a business to self-empowerment. These courses will be held through online professional-led training as well as residential summer camps. They will provide social interaction, skills training and peer-to-peer support, which will equip attendees with new skills to become independent young adults. The goal of the program is for participants to leave with improved independence, increased employability and new aspirations.
In the first few months of receiving the award, Action Duchenne delivered the first installment of the ‘Yes I Can’ training sessions, four online professional-led sessions open to young adults ages 14-25. The topics included travel, hobbies (photography), employment and more.
From March 2023 to August 2023, Action Duchenne will launch the second online program in the series. Based on feedback from the first session, this 12-week program has more emphasis on mental health and time for participant interaction. All sessions are carefully designed to empower young people and provide them with examples of role models with Duchenne living active and fulfilled lives.
In addition to the online programs, Action Duchenne will host residential weekends to give young adults a chance to spend time with others with Duchenne during a three-night, fully funded long weekend. The retreat takes place at a fully accessible centre with outdoor adventure activities delivered by trained instructors. The first program occurred in late May and participants took part in abseiling, canoeing and climbing while spending time with their peers. This is an important experience for social interaction, confidence building and skills training.
Action Duchenne plans to provide additional online training sessions on topics like the transition from paediatric care to adult care, accessible sports, accessible gaming and psychological support. The organization’s long-term plans are to continue the Supporting Young People Transitioning to Adulthood program using feedback received from participants on additional topics they want to explore. They will work with partner organizations to offer everyone living with Duchenne a place on a course.