What we do

We want to help you all to have the best quality of life you can, with rewarding experiences, supportive friendships and sound advice whenever you need it. We do this by:

  • Subsidising holidays for families. These have included trips to Le Fosso in Brittany, Avon Tyrrell in the New Forest and Horning in Norfolk. We find accessible accommodation so that several families can stay together as a group, get to know each other, relax and have fun!
  • Organising day trips to attractions in the UK, including the National Motor Museum at Beaulieu, Chester Zoo and Duxford Air Museum. There is also an annual Family Fun Day at Bewl Water in Kent. We encourage all our members to arrange days out in their areas and are happy to help with this, or you can just come along and enjoy the events that we organise.
  • Connecting families who are close to each other, so they can form local networks for mutual support and friendship.
  • Our Development Officer runs an extra Facebook page, called Duchenne Information and Updates, on which she shares latest developments and upcoming events across the whole community, covering all the charities. She also hosts a weekly live video to share the latest news, reassure parents and talk about anything Duchenne related. Please look for it and ask to join the page.
  • Running a free helpline for families in need of some extra support. The number is 0800 121 4518. The helpline is operated by our Development Officer and has an answerphone, so please leave a message if your call is not answered immediately.

See our events and holidays page for forthcoming trips, fun days and holidays.

Quarterly newsletter

We send out a quarterly newsletter to our members with news and tips from families, event dates and Duchenne-related news. Apply here here if you would like become a member of the DFSG.