Action Duchenne are launching an aspirational project, providing young people living with Duchenne with crucial support, training, guidance and friendship in the challenging transition from paediatric to adult care.
A decade ago, at diagnosis, Duchenne families were told to “go home and enjoy your child” because the outlook was so bleak. Now life expectancy is increasing and more young people are living longer, more fulfilled lives with Duchenne muscular dystrophy. However, this brings with it its own challenges where society is often not equipped to support a generation that was simply not meant to be here.
I 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.
Young adult living with Duchenne
As the muscle wasting condition progresses, people living with Duchenne often find it difficult to maintain friendships. The feelings of isolation and anxiety that many young people living with Duchenne experience, and the reliance on full-time care makes it difficult for them to gain independence as they transition to adulthood. They find themselves on the outside looking in as their friends start thinking about going out socially, going to university, or finding work.
Yes I Can
Action Duchenne’s much-needed project has a simple aim: to empower young adults living with Duchenne, so they can seize control of their lives. They want to remove the limits imposed by the challenges of transition and pave the way for them to realise their dreams.
This ground-breaking project will combine residential and online professional-led training to provide targeted social interaction, skills training and peer-to-peer support. Wednesday 8th June, 7pm will be the first of 12 virtual training workshops for young people aged 14-25 who are living with Duchenne.
The 12 online sessions will be full of information designed to tackle some of the challenges faced by the young people: learning to drive, going on holiday, studying, living independently, developing hobbies, finding career opportunities and being in a relationship. Each session will have an expert guest speaker, as well as invaluable experience and peer-to-peer support from adults living with Duchenne.
A key element of this transformational project will be the weekend residential summer camps for 16-25 year olds. Held at the highly regarded Calvert Trust (award winning accessible activity centre in Devon), they will bring together small groups of young people to get to know each other. The residential will also offer a chance to take part in activities that are not usually available to this group. Establishing a social group will ensure long-term engagement with the training programme, and will also provide peer-to-peer support.
In the driving seat
Through this ambitious programme Action Duchenne are determined to put young people in the driving seat of their transition to adulthood. Their aim is for this pilot project to have long term impact within the Duchenne community, empowering all young adults living with Duchenne to develop increased independence, employability and aspirations.
In keeping with the overall vision of the charity, this will have an impact in a much wider sense. Empowering these young people will in turn result in a change in the perceived “value” of disabled people, improving social cohesion, acceptance and inclusion.
Expanding support and education services
Action Duchenne are at the heart of the Duchenne community, delivering long term projects which support families right from diagnosis through their ‘All-through Support’. Action Duchenne are grateful to Garfield Weston Foundation, HM Government (in partnership with the National Lottery Community Fund), Pfizer, PTC Therapeutics, Roche and Sarepta Therapeutics for making this project possible.
ENDS
For all media enquiries please contact Lynnette Ellison (Marketing & Support Officer) via lynnette@actionduchenne.org.
Notes to Editors
About Duchenne muscular dystrophy
Duchenne muscular dystrophy is a rare genetic muscle-wasting disease. The progressive condition is usually diagnosed in early childhood and mainly affects boys. In the UK, approximately 100 cases are diagnosed each year, and there are approximately 2,500 people living with the condition at any time.
People living with Duchenne experience progressive muscle weakness and typically need to use a powered wheelchair from their early teens. The heart and breathing muscles are affected and most will require a ventilator and 24 hour care in their twenties; life expectancy is around 30 years in the UK.
There is no cure and treatment options are limited.
Duchenne can occur unexpectedly in any family with a third of cases occurring in families with no previous history of the condition.
About Action Duchenne
Formed in 2001, Action Duchenne was the first national charity dedicated to supporting those living with Duchenne muscular dystrophy. Our work to date has seen over £10m invested in research, support, educational programmes and campaigns. We have made some incredible achievements. We have a clear vision: a world where lives are no longer limited by Duchenne muscular dystrophy. We are working to deliver the vision through our three core objectives:
- Developing effective treatments for all by funding research, educating clinicians and researchers, supporting clinical trials and campaigning for access.
- Building a community by uniting families, educating about Duchenne and raising the profile of the condition to a wider audience.
- Striving for a more inclusive society by promoting the importance of human equality, day-to-day acceptance of disability and accessibility for those with Duchenne
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