Information Point Newsletter: December 2009 (amended)
- 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.
The Information Point for Centronuclear and Myotubular Myopathy Information ~ Support ~ Awareness
Visit our Website at www.centronuclear.org.uk
Read our Latest Newsletter
The Information Point Online Shop www.buy.at/theinformationpoint
Member of the National Council of Voluntary Organisations Community Champions Fund Recipient * UnLtd Millenium Awards Scheme Recipient
This communication is strictly confidential and intended only for the addressee above. If you are not the named addressee or have received this communication in error please do not read it, but notify us immediately and then delete it from your computer. The contents must not be disclosed to any other person and you must not take copies of it. We take reasonable steps to ensure that emails sent by us are tested for software viruses but we do not accept responsibility for any loss or damage which may occur from using this email or any attachment.