Community members

The people listed below are members of the Centronuclear and Myotubular Myopathy communtity. Without them the Information Point would be a lesser place.

Anne, Mel and Wendy at The Myotubular Trust

For being so very supportive and general all round good eggs. You’re the best.

Michael Abram

For being supportive of the website since day one, for helping with technical bits and bobs and for telling everyone and anyone who will listen about the Information Point and The Big Sunflower Project.

Story contributors

Everyone who has so generously contributed their story either for the website or for a newsletter.

So many are told at the time of diagnosis, how incredibly rare the conditions are and whilst there is no arguing this fact, being able to show the diversity of people from around the world who are affected, really helps dispel the notion that people are alone,  raising awareness and educating the wider world about the complexity of the conditions  and what living with a diagnosis of CNM/MTM means to different people.