'It takes enthusiastic people to bring things ahead of schedule’

Professor F Muntoni, Professor of Paediatric Neurology, Imperial College, London

Our charity relies on the help of volunteers to assist with key events. Voluntary work ranges from project management of the new Patient Registry; help with copywriting and design; scientific advice and translation of medical articles into laymen’s terms, to pro bono help with charity administration, accountancy and legal work.

But we have also been helped by volunteers to promote awareness, and simply to lend a helping hand at various Trust events.

For example:

  • Parents of affected children were encouraged to enlist the support of their local schools and children’s groups to promote participation in our World’s Longest Bunting attempt in 2006. As a result, in just a few week, over 1,620 children represented by over 40 children’s groups and schools, took part, achieving a new Guinness World Record for Myotubular Trust!
  • Parents, family members and friends were asked to support Jeans for Genes patient registry grant funding in 2008 by speaking about genes to children in their local schools.
  • 30 volunteers helped to host and run our first charity auction event in a wide variety of roles ranging from organizers to cloakroom attendants




  • Several qualified nursing and child-care volunteers helped to organize and run an all-day creche for affected children and their siblings at our first Family Conference in 2007, as well as help with the organization of the conference itself.
  • 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 the professional expertise to help with any aspect of our charity’s work, we would love to hear from you! Please feel free to contact Anne or Wendy or Mel at contact@myotubulartrust.org.

Thank you!