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Our World: Centronuclear and Myotubular Myopathy News

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  • TONI ABRAM
    The latest Information Point newsletter is now available to read at 
    Message 1 of 2 , Apr 30, 2010
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      The latest Information Point newsletter is now available to read at 
      http://centronuclear.org.uk/theinformationpoint2010/newsletters/2010/2010_1/front_page.html
      To start the new year, the newsletter has a new look, to go with our new website. As well as looking different, it has been designed to make it easier to navigate, meaning that each article now has its own page - to return to the newsletter contents here on the front page, just click on the signpost logo at the top of a page or the link at the foot of the page.
       
      The name of the new newsletter is Our World. The name was inspired by Jona Watson-Riley in the US who at the end of last year, posted the newsletter on her Facebook page with the words, 'read up on what's going on in our world' which I felt was a really simple but effective way of summing up what the newsletter tries to achieve, so a big thank you to Jona for the idea.
       
      In this issue you can read about the creation of the new website and about the illustrations used in the new designs, which have been created especially for the Information Point by the artist Rebecca J Kent. There is also research news, including a feature about research going on at Michigan University; fundraising news and other stories including a new feature called 'All About Me' which aims to find out more about people from our community. Frank Gadd from South Africa and Scott Crane from the US are the first people to have taken. It is hoped to make this a regular feature and is open to anyone affected by CNM / MTM or parents of those affected - if you would like to take part, please get in touch for a questionnaire.
       
      A big thank you to everyone who has taken the time to write something for this issue, which for the first time ever is wholly about CNM / MTM. In addition, I am so happy to see stories this time around about affected children, sitting alongside stories from affected adults, so showing the diversity of the condition.
       
      I hope you will enjoy reading this latest issue. Please let me know what you get up to over the coming months, and if you have any ideas for the next issue, whether that be a story about fundraising, meeting with others families, an achievement that you would like to share or anything else you feel would be of interest to readers of the newsletter, then get in touch. 


      Toni  
       
      www.centronuclear.org.uk
    • TONI ABRAM
      Please find attached the latest issue of the Information Point newsletter.   
      Message 2 of 2 , Apr 30, 2010
      • 0 Attachment
        Please find attached the latest issue of the Information Point newsletter. 
         
        http://centronuclear.org.uk/theinformationpoint2010/newsletters/2010/2010_1/front_page.html

        To start the new year, the newsletter has a new look, to go with our new website. As well as looking different, it has been designed to make it easier to navigate, meaning that each article now has its own page - to return to the newsletter contents here on the front page, just click on the signpost logo at the top of a page or the link at the foot of the page.
         
        The name of the new newsletter is Our World. The name was inspired by Jona Watson-Riley in the US who at the end of last year, posted the newsletter on her Facebook page with the words, 'read up on what's going on in our world' which I felt was a really simple but effective way of summing up what the newsletter tries to achieve, so a big thank you to Jona for the idea.
         
        In this issue you can read about the creation of the new website and about the illustrations used in the new designs, which have been created especially for the Information Point by the artist Rebecca J Kent. There is also research news, including a feature about research going on at Michigan University; fundraising news and other stories including a new feature called 'All About Me' which aims to find out more about people from our community. Frank Gadd from South Africa and Scott Crane from the US are the first people to have taken. It is hoped to make this a regular feature and is open to anyone affected by CNM / MTM or parents of those affected - if you would like to take part, please get in touch for a questionnaire.
         
        A big thank you to everyone who has taken the time to write something for this issue, which for the first time ever is wholly about CNM / MTM. In addition, I am so happy to see stories this time around about affected children, sitting alongside stories from affected adults, so showing the diversity of the condition.
          
        I hope you will enjoy reading this latest issue. Don't forget you can find us on Facebook where everyone is welcome to join in by posting questions, photos, videos and links. You can also now find us on Twitter.
         
        Please let me know what you get up to over the coming months, and if you have any ideas for the next issue, whether that be a story about fundraising, meeting with others families, an achievement that you would like to share or anything else you feel would be of interest to readers of the newsletter, then get in touch.  
         
         
         
         
        www.centronuclear.org.uk
        www.buy.at/theinformationpoint
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