Taking Control

Taking Control

Action Duchenne’s Transition Projects for young people living with Duchenne.

Yes I Can

“Our Yes I Can transition project has had a transformative impact on the young people who attend. We have seen people’s self-esteem, Independence and confidence greatly improve due to our exciting activity-led residential weekend away, learning new skills, and receiving expert guidance from our workshops hosted by DMD adults with lived experience and external speakers on topics such as learning to drive or recruiting a team of carers. Yes I Can truly empowers young people to seize control of their lives!” Ravi Mehta, Project Lead

As part of our vision to create a world where lives are no longer limited by Duchenne muscular dystrophy, Action Duchenne identified a significant unmet need gap in support provision for young people living with Duchenne at various stages of their lives. While there is clinical support in the transfer from paediatric to adult medical services, young people often feel isolated and find it very difficult to access further education or employment. They face challenges with a range of issues such as living independently and employing PA’s as well as ensuring that their mental health and wellbeing needs are addressed. 

Beginning in 2022, ‘Yes I Can’ for young people aged 14 – 25 who are living with Duchenne combines fortnightly online training sessions and residential weekends away. Our online sessions have focused on a wide variety of topics from accessing university, coping with anxiety, managing money and learning to drive and have been led by expert speakers as well as those with extensive lived experience. The residential weekends have taken place at accessible outdoor adventure centres in Exmoor and in the Lake District, enabling young people living with Duchenne to meet others, develop their support networks and to build confidence and independence.

“It was heartening to witness my sons meeting other young people living with Duchenne, who get exactly what their lives are like. They were sharing new experiences of physical challenge, getting inspired by each others’ examples and having a laugh – you can’t get much better than that! Brilliant!” Georgie Steele Duchenne Parent

Become a Yes I Can Mentor

If you’re an adult living with Duchenne, what would you say to your younger self? What do you think could help address the challenges young people face during this time? Would you like to make a tangible difference to the lives of others living with Duchenne by working with us to change transition for the better? 

‘Yes I Can’ has been led by our Project Engagement & Support Coordinator Ravi Mehta who lives with Duchenne himself. Ravi provides invaluable ongoing support to the young people as well as inspiration for the future for many of them. As the project develops, we are keen to expand this model and would love to offer those with lived experience of the challenges of the transition to adulthood to become a mentor to those going through it right now. Benjamin James came along on one of our residential weekends as a mentor and felt that he was able to witness first hand the powerful impact of this experience. 

“There was a strong sense of community and shared understanding, meeting others who just ‘got it’ and being able to share my experiences over the weekend. Seeing other young people challenge themselves and build confidence in what is achieveable at the residential weekend was so encouraging.” Benjamin James, Yes I Can Mentor

Read his blog here to find out more. 

We believe that many of the adults living with Duchenne in our community have a wealth of information and lived experience to share and can provide inspirational advice and support. This could be to be part of our online sessions by sharing a skill or offering support with experience of living independently, attending university, employing PA’s or anything other aspect of transition. If you’d like to know more about becoming a mentor for Action Duchenne’s transition project, please get in touch with us: ravi@actionduchenne.org

Turning Point

Our focus on support during points of challenging transition has expanded to encompass those aged 8 – 14. We know that this is a time both of transition from primary to secondary school and also often into full time wheelchair use for many of those living with Duchenne. Our Turning Point project aims is to develop more understanding of the hurdles that can come from the transition and to create a safe space for the boys to engage with boys at a similar age. 

We have created a hangout session where the boys just chat amongst themselves, play some games and develop relationships with others who really understand, as well as sessions with guest speakers on topics such as managing anxiety and gaming. 

“My favourite up to now has been the MindJam session, learning how accessible gaming can work, watching the boys chat freely about what games they play on and how far into the game they are. This session was fantastic.” Dawn Craig, Project Lead

This project also offers information and support to parents and professionals. Contact (charity for families with children with disabilities) have delivered a brilliant interactive online workshop on Managing Behaviour which covered neuro-diversity, school and home life. There’s also been a really useful session on navigating the EHCP process.

“I would love to continue to grow Turning Point with eventually having regular in person meetups, get the children involved in fundraising and spreading awareness and continue with regular online sessions. We want to empower young people living with Duchenne and to give them the support they need to fulfil the potential that we know they have.” Dawn Craig

Upcoming Turning Point Online Sessions will be held on the 3rd Wednesday of the month:

March 20th – 6pm

April 17th – 6pm

May 22nd – 6pm

June 19th – 6pm

For more information, please contact dawn@actionduchenne.org. 

Hang Out at the Action Duchenne International Conference 2024

During our 2023 International Conference, young people living with Duchenne and their siblings joined our Hang Out are and had a chance to take part in gaming workshops run by MindJam, music with Rokzkool and Art Therapy, as well as plenty of lego building! The Hang Out is an amazing opportunity to build relationships, gain skills and talk to those who really understand. Save the date for our 2024 Annual International Conference where our Hang Out will be even bigger and better: Friday 8th and Saturday 9th November 2024.

At the Heart of Action Duchenne

Right at the heart of our vision as a charity, both Turning Point and Yes I Can are safe, supportive spaces for young people to feel understood, to forge friendships and social connections, to gain skills and develop knowledge. We want to challenge society’s perceptions of those living with disabilities by creating change in what young people living with Duchenne believe is possible and by providing the support they need to achieve it.

Thank you

Action Duchenne would like to thank the following sponsors who have provided financial support for these projects but have no involvement in these projects, and all the individuals whose contributions helped to make these projects happen:

The National Lottery, PTC Therapeutics, Garfield Weston Foundation, Sarepta, Pfizer and Roche.