Community members

The people listed below are members of our community. Without them the Information Point would be a lesser place.

Wendy, Anne and Mel at The Myotubular Trust

For being so very supportive and general all round good eggs, regularly allowing me to bounce ideas off you and for helping when times get tough. You're the best.

Sophie Hughes

When the Information Point applied to the UnLtd Millenium Awards Scheme for a Be Cause Award, Sophie rallied all her friends on Bebo to vote for the Information Point. Without her efforts we would never have received the award.

Michael Abram

My dad, for being supportive of the website since day one, for helping with technical bits and bobs and for his newly acquired marketing skills which sees him tell everyone and anyone who will listen about the Information Point website and webshop.

And Finally

Everyone who has so generously contributed their story either for the website or for one of our newsletters.

So many of us are told when we get our diagnosis, how incredibly rare it is and that there is next to no one else with the condition and whilst there is no arguing the fact that this is a rare condition, being able to show the diversity of people from around the world who are affected, really helps dispel the notion that we are alone and educates the wider world about the complexity of the condition and what living with a diagnosis of CNM / MTM means to different people.

Every story helps to raise awareness and shows someones reality of living with CNM / MTM. Thank you to all of you who have taken the time, to share a part of you and contribute to the work of raising awareness.

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