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Our World   The Information Point for Centronuclear and Myotubular Myopathy

Newsletter for the
Centronuclear and Myotubular Myopathy Community

Issue 1: 2012

Information Point News

  The Big Sunflower Project

  British Library Archive

  Spend and Raise

  Our Friends

Myotubular Trust News

  Hope Walk

  London 10K

  Consensus Statement

Fundraising

  Kilimajaro Climb

  NSTAR Walk

  For my Boys

  Rare Disease Day

  Every Australian Counts

  New Zealand Adventurer

•  Benefits of Physiotherapy

  Give it Back, George


Hello and welcome to the first issue of Our World for 2012.

It has been a busy few months for the Information Point. Our World has undergone some changes, making it more accessible and easier to produce and The Big Sunflower Project is back with over 200 packets of seeds sent to the UK and Europe. Both projects have been made possible by people and organisations who have given their time, services and products free of charge. Without them the Information Point would be unable to do what it does and we are incredibly grateful for their support.

Our website was recently archived by the British Library and it is exciting to have another outlet for raising awareness of centronuclear and myotubular myopathy. Our eStore is continuing to do good business also with £79.25 raised for research into centronuclear and myotubular myopathy since it re-launched last year. If you haven't used the eStore before, please pop by, every purchase really does make a difference.

This issue is a truly global affair with stories from and about the UK, America, South Africa, Australia and New Zealand. Thank you to everyone who has contributed a story, they are so important for showing the diversity of centronuclear and myotubular myopathy and also highlighting fundraising events which enable current research to continue - without fundraisers such as these, both big and small, the research that is happening right now would not be taking place, so the difference these people make to us all should not be underestimated.

I hope you will enjoy reading this issue of Our World and if after reading it you feel inspired to share your story, please get in touch so it can be included in a future issue.

Toni

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