Project information

Lights, Camera, Action!

To empower people living with Duchenne to be more confident, active, social and healthy.

One year

Charity information: Action Duchenne

Action Duchenne logo
  • Need


    Duchenne muscular dystrophy causes increasing disability as it progresses. This means the people affected by the condition, require increasing amounts of care, resulting in loss of independence, social isolation, unhappiness and poorer health and life outcomes. Duchenne frequently undermines the confidence of people to lead a fulfilling life.


    Lights, Camera, Action! will enable people living with Duchenne to show-off all the exciting, fun and social things they get up in spite of the challenges they face. It will empower other people affected by Duchenne, to live the fullest life possible. Young people with Duchenne will be invited to submit videos to a special website, curated by Action Duchenne, and be able to get an insight into the exciting lives of others from all over the world.

  • Aims

    Aim 1

    To have 100 videos submitted by young people living with Duchenne, from all over the world.


    » A focused social media campaign will generate excitement with each submitted video generating increasing amounts of buzz

    What success will look like

    100 (or more) videos will feature on the website. We will measure views.

    Aim 2

    See people living with Duchenne take up new hobbies & activities, inspired by seeing others' videos


    » The website will contain information and resources, linked to the activities set out in each video so that viewers can find out how to participate.

    What success will look like

    We will measure link click through rates, info pack leaflet downloads and follow up with engaged individuals.

    Aim 3

    Increase understanding of the barriers disabled people face accessing social and leisure activities


    » Survey participants to gauge how difficult, or easy, it was to access the activity they were inspired to try, and ask them to video their experience

    What success will look like

    Carry out qualitative and quantitative surveys and publish videos of peoples' experiences of accessing a range of activities in the UK.

  • Impact


    A more confident and active generation of people, living with Duchenne in the UK. We will measure this with surveys before and after the project. We hope to see an improvement in the way the more popular activities (and the organisations that might provide them) are delivered with disable people in mind. This will be done by a campaign to follow up with larger organisations (for example cinemas, leisure centres) on how they improve their offering for disabled people


    We do not want individuals submitting videos in which they have put themselves at risk to gain attention. That is why videos will be submitted to Action Duchenne to curate, rather than just uploaded to social media where that kind of behaviour could be 'rewarded'.


    Via regular specialist email and social media campaigns, outlining the progress of the project.

  • Budget

    Budget - Project Cost: £4,000

    Loading graph....
      Amount Heading Description
      £4,000 Website development Work to develop a bespoke website for the project
  • Background


    Predominantly in the UK, but people affected by Duchenne muscular dystrophy from all over the world, will be welcome to participate in the project.


    People living with Duchenne muscular dystrophy.

  • Why Us?

    Why Us?

    Action Duchenne was the first charity, dedicated solely to improving the lives of all people affected by Duchenne muscular dystrophy; we have been at the forefront ever since. When we were founded in 2001, average life expectancy for people with Duchenne was late teens, it is now late twenties. We have launched numerous initiatives to improve the quantity and quality of life for patients. We are striving for a world where lives are no longer limited by Duchenne muscular dystrophy.

    Read more about the Charity running this project.


    Iain Clarke

    Head of Operations - has worked in the Duchenne community for years on a range of projects and initiatives.

    Peter Duffy

    Director of Campaigns & Strategy - runs a highly successful media channel, 'Muscle Owl' creating content for muscular dystrophies.

It is hard to describe the impact of Sebastian's diagnosis, not just for my husband James and I but for our friends and family and all who love us. Our lives will forever be divided into before and after DMD. For me personally, my shattered heart will never truly mend.

Lizzie Deeble (Duchenne parent)