I now more feel optimistic and looking forward to next year where I hope to get more involved and possibly present a talk myself.
Daniel Messenger (adult living with Duchenne)
When Action Duchenne was founded in 2001, the average life expectancy for a young person living in the UK with Duchenne was late teens. It is now late 20s with more people than ever living into their 30s and 40s.
We have always advocated for the best standards of care for people living with Duchenne. Early on, we identified the importance of helping young people living with Duchenne to equip themselves with the skills and power to achieve the best life possible.
How do we do this?
Adult led education projects
Takin’ Charge was our Big Lottery funded transition to adulthood project, empowering 80 young people with Duchenne muscular dystrophy and their families. It provided aspirational information, advice and one-to-one support to young people during their transition to adulthood.
Through the support planning (Action Duchenne) has done with Zak and our family we have been able to identify some very clear outcomes that will ensure Zak has access to education, training opportunities as well as social interaction
Vici Richardson (Parent)
One of the key successes of the Takin’ Charge project was co-producing the transition programme with a steering group of older adults living with Duchenne.
DMD Pathfinders
DMD Pathfinders is a user-led charity, born out of the Takin’ Charge project, which promotes choice and control and quality of life for teenagers and adults living with Duchenne in the UK. It campaigns for improved standards of health and social care and provides advice, guidance and support to teenagers and adults living with Duchenne muscular dystrophy on issues such as independent living, housing, employment and welfare rights.
DMD Pathfinders have produced a range of guides and advice for adults living with Duchenne which you can find by following this link.
The guides includes:
- Ventilation in DMD: Frequently Asked Questions
- Touch, Tap, Swipe (Choosing and Using Touch Phones and Tablets)
- Life and Breath – Emergency Procedures for Power Failures
Really pleased to see more and more adults inspired to share their own experiences at the conference, it’s no longer just a few of us – there is a real community and it’s getting bigger and stronger all the time – Jon Hastie (CEO & co-founder DMD Pathfinders)
Adults at the Conference
Adults living with Duchenne are a huge focus at the Action Duchenne International Conference. Every year Action Duchenne invite DMD Pathfinders to run sessions across the entire weekend where adults share knowledge, support and experiences.
Absolutely fantastic Conference, had a great time meeting you and making new friends with interesting people all with different stories to tell and tips to share.
– John Ashby (adult living with Duchenne)
Passive and assisted passive physiotherapy
Marina Di Marco, Principal Neuromuscular Physiotherapist at Queen Elizabeth University Hospital Glasgow, and long-time friend of Action Duchenne has kindly shared some adult physiotherapy resources with us.
The videos feature Marina demonstrating passive and passive assisted movements which she uses to help support her training for carers and family members who help young people and adults with their movements.
Looking to get involved?
- Get support
- Internships
- Talk to us about getting work experience
- Update your details on the UK DMD Registry – helping you access clinical trials and advancing research
- Tell us your story
- Guides and information
