We are delighted to share the news with our community that the award-winning Demelza Children’s Hospice have chosen us as their partners to deliver an important project.
About the project
The project will see Action Duchenne working in partnership with Demelza to fully catalogue the needs and requirements of our young adults living with Duchenne muscular dystrophy. This will be the first step towards developing targeted support programmes to help everybody in the future.
We are delighted to be working in partnership with Action Duchenne on this exciting new transition project. This news is the first step in an ambitious, life-changing project for everyone living with Duchenne muscular dystrophy supporting them in the, often difficult, transition into adulthood.
Jane O’Neil, Deputy Director of Family Support at Demelza
Our vision, in the long-term, is to develop a targeted support programme that will empower our young adults to transition to an independent adult life that matches their aspirations. We are working in partnership with other organisations such as Demelza Children’s Hospice and Pathfinders Neuromuscular Alliance; drawing upon upon their lived experience and expertise to work together to support the community.
Fact-finding
We know that this will be a large undertaking. This first ‘fact-finding’ step will allow us to work with the young adults to formalise the training and support they want and need, and to find out what they are trying to achieve.
We will also work with the clinics to find out exactly what support they are offering and how effective it is.
Once we find out what is needed, and what is currently provided, we will be able to find out what is missing – to bring about a joined up, all encompassing support system.
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. I’m really looking forward to seeing the results of the questionnaire I put together, to find out what young adults living with Duchenne REALLY want from life.
Ravi Mehta, Project Engagement & Support Coordinator, Action Duchenne
Your views matter
If you are a young adult living with Duchenne, please take part in the survey below to help us understand what is important to you. This is your chance to have your say and for you to play a part in shaping the future.
If you would like to talk about the project in more detail, need assistance in completing the survey, or have any questions; please contact Ravi via ravi@actionduchenne.org or Sam via samantha@actionduchenne.org
Survey for clinics
Duchenne Nana walks 100 miles
