• ‘It takes enthusiastic people to bring things ahead of schedule’
    Professor Francesco Muntoni, Professor of Paediatric Neurology, Imperial College, London

We rely on the help of volunteers to assist with everything from the day-to-day running of the Trust, to key fundraising, and family centred events.

Voluntary work ranges from copywriting and design; scientific advice and translation of medical articles into laymen’s terms; pro-bono help with charity administration, accountancy and legal work; translation of emails and documents.

Volunteers also help us to promote awareness and are instrumental in helping to organise and deliver our fundraising events and family conferences – which we can only achieve with help!

Here are examples of the help we receive:

  • A number of actors, newsreaders, musicians and performers have supported our Christmas concerts and fundraising events.
  • Several qualified nursing and child-care volunteers help to organise and run the creche for affected children and their siblings at our Family Conferences.
  • Volunteers help to host and run our fundraising events, in a wide variety of roles ranging from photography to cloakroom attendants.
  • Many volunteers have helped with translation of documents and emails into a variety of languages, enabling us to keep in contact with families across the globe, to keep them informed.
  • Our ever popular London Bridges and other Hope Walks are planned by volunteers.
  • Local schools, nurseries and children’s groups (1,620 children were involved!), helped the Myotubular Trust achieve a Guinness World Record for the World’s Longest Bunting in 2006!
  • And one parent even volunteered to represent us at a Myotubular Trust event in Romania, with just 4 days’ notice!

If you would like to donate your time, or have  professional expertise to offer the charity, we would love to hear from you. Please feel free to email us at

Thank you!


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