Action Duchenne

We’ve recently joined forces with Action Duchenne, a patient and parent-led charity providing a lifeline to those living with Duchenne muscular dystrophy, and their families, to establish a peer-to-peer support project. The project aims to develop a network of young adults (25 years and under) to maximise opportunities and maintain aspirations for the future as they transition into adulthood and beyond.

Transition from paediatric to adult care is a challenging time for young people living with serious or terminal conditions and their families, going hand in hand with the transition to adulthood and we’re really excited to be working alongside the team at Action Duchenne on this programme.

The pilot programme will:

  • provide professional-led residential and online skills training for a small group
  • establish peer-to-peer support groups to empower adults in the long-term
  • identify best practice to allow easy national and international sharing

Jane O’Neill, our Deputy Director of Family Support, who is leading on the project said:

“We’re really looking forward to working with the team at Action Duchenne on this pilot. Transition from paediatric to adult care is extremely challenging. A good transition should build on the young person’s strengths, working with them to plan for how they can meet their aspirations in life – this project puts the young person at the heart of what we do.”

Ravi Mehta, Project Engagement and Support Co-ordinator at Action Duchenne, who has the condition himself, said:

“I am so proud to have been involved in this ground-breaking transition project since the outset. One of the reasons I chose to work for Action Duchenne was to help kids and young adults who also live with Duchenne to make a smooth transition to adulthood. Growing up isn't easy when you live with a disability, I can vouch for that fact. But I hope this amazing project will find out what meaningful support is needed to help make life a bit easier for young people.”

For more information on the project and how to get involved, go to Action Duchenne's website.
Twitter - @ActionDuchenne


Transition to adulthood

A boy interacting with a Demelza member of staff.

Transition isn’t a single event, but a gradual process of supporting a young person, and their family, through their teenage years into adulthood.

Find out more

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