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7278Information Point Newsletter: December 2009

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    Dec 12, 2009
      Please find attached the latest issue of the Information Point newsletter, including from the Myotubular Trust about their new website, an explosive night at the House of Commons, their second call for research projects and the story of one of a range of seven very special christmas cards being sold this year to raise funds for research. There are also some lovely stories from CNM / MTM families living in the UK, USA and Australia, plus a round up of some forthcoming events that you can become involved with.
      A big thank you to everyone who has taken the time to write something for this issue. So many of us are told when we get our diagnosis, how incredibly rare it is and that there is next to know 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 over the past year, to share a part of you and write something for the newsletter or the website.

      If you have any comments about this issue of the newsletter or the website, please get in touch or complete our feedback form and if you have any ideas for future issues or things you would like to share, say projects, meetings, fundraisers, get togethers, milestones, accomplishments or anything else which you feel would be of interest to the community, please get in touch about these also.


      Wishing everyone a happy, healthy and peaceful holiday season.




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