Festival Charity

To donate to Action Duchenne you can find their Just Giving page here:



What is Duchenne
Duchenne muscular dystrophy is a rare genetic condition caused by mutations in the dystrophin gene, which prevent production of a vital muscle protein called dystrophin. 

The lack of dystrophin makes muscles more susceptible to damage and leads to muscle wasting over time. 

People living with Duchenne muscular dystrophy experience progressive muscle weakness and typically need to use a powered wheelchair from their early teens. 

The heart and breathing muscles are eventually affected and most will require a ventilator in their twenties; life expectancy is around 30 years but has improved with palliative care developments.  

There is no cure.

 Who we are
 We are very proud to have recently launched We are Action Duchenne – a moving and uplifting film about Riley and his family to help raise the profile of Duchenne muscular dystrophy. It explains our cause and why what we do is so important.

Action Duchenne has a very clear vision: a world where lives are no longer limited by Duchenne muscular dystrophy. 

 We have three core objectives and are proud to spend 87p in every £1 raised on our charitable activities:

  • Funding research for everyone living with Duchenne 
  • Cutting-edge science education programmes 
  • World-class support for Duchenne families