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Our World

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  • TONI ABRAM
    Hello Everyone Work is now well underway on Our World issue 2. The closing date for articles is Friday 20 August, so there is still time to submit your story.
    Message 1 of 3 , Aug 12, 2010
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      Hello Everyone
       
      Work is now well underway on Our World issue 2. The closing date for articles is Friday 20 August, so there is still time to submit your story.

      Our World couldn't exist without your contributions - every one helps to raise awareness of cnm /mtm and the many different ways people are affected, so please do get in touch with your stories; maybe you have achieved something you never thought you would, say something sporting or academic, fulfilled a lifetime dream, maybe you have met a celebrity or travelled somewhere / attended an unusual event. Maybe you would like to write an opinion piece on something that affects you or that you feel strongly about as a person with cnm / mtm or maybe something else - if so, the Information Point wants to hear from you.

      Thank you to everyone who has sent a story so far. If you have sent us an article, we will always send you a draft to check before publication. Please do remember to check this and let us know it is okay, as we can't publish without your consent of the final version and don't forget to send a photo or two, as they help to illustrate the pieces and it is nice for people to see who has contributed the article. 
       
      If you have a story to share, contact us at centronuclear.org@....
       

       

       

      Toni Abram
      Founder
      The Information Point for Centronuclear and Myotubular Myopathy
       



      www.centronuclear.org.uk          |         www.buy.at/theinformationpoint


       
    • TONI ABRAM
      Hello Everyone   Work on the next issue of Our World is now underway. If you have already submitted a story for inclusion or are working on one - thank you.
      Message 2 of 3 , Jul 11, 2011
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        Hello Everyone
         
        Work on the next issue of Our World is now underway. If you have already submitted a story for inclusion or are working on one - thank you.
         
        If you have a story you would like to share or if you would like to take part in All About Me (details below), there is still time to get involved, so please get in touch and if you  are taking part in The Big Sunflower Project for Centronuclear and Myotubular Myopathy, don't forget to tell us how you are getting on, so we can include your stories too.
         
        The closing date for this issue is 21 July. 
         
         
        Toni Abram
        Founder
        The Information Point for Centronuclear and Myotubular Myopathy

         
        The Information Point is hoping to publish the next issue of Our World around July / August time and we are now looking for people to take part in our 'All About Me' feature. If you would like to take part, please answer the questions below and return these to centronuclear.org@... with photos if possible.

        The Information Point is keen to include stories about males and females, of all ages, by people affected by all forms of the condition and from anywhere within our global community. Answers can be as long or as short as you feel appropriate and you may answer for yourself or for a child in your care or you can submit a team effort, such as that submitted by Wendy and Zak Hughes in our last issue (http://centronuclear.org.uk/theinformationpoint2010/newsletters/2011/2011_1/zak.html).

        If you feel there is more you would like to say that isn't covered by the questions please feel to amend them or include an introduction about yourself. If there is a question you would prefer not to answer, please leave it out.


        If you take part, a draft copy of the article will be sent to you for checking prior to publication.


        1. What form of cnm / mtm do you have e.g. dominant, recessive, x-linked, unknown?

        2. When did you first get diagnosed?

        3. What symptoms prompted your diagnosis?

        4. How long did it take to get you diagnosis?

        5. How were you diagnosed e.g. muscle biopsy?

        6. What impact did the diagnosis have on you?

        7. Have you explained cnm / mtm to family members and what was their reaction?

        8. What implications do you think it has it had on your family?

        9. Has it affected you e.g. telling your children, starting a family, genetic counselling?

        10. Do you have advice for people who are looking for a diagnosis?

        11. What are your current symptoms?

        12. What treatment are you having, and have you had?

        13. How did you find a doctor?

        14. What has been your experience of the healthcare system and healthcare professionals?

        15. Has your diagnosis had any health insurance implications for you?

        16. What advice would you give to someone who has just been diagnosed with cnm / mtm?

        17. What’s your favourite book / film / music?

        18. What did you want to be when you were younger?

        19. What is a favourite / memorable event from your childhood?

        20. Who do you think has most influenced you in your life and why?

        21. What’s the best advice you’ve been given?
         
         
         
         
         
      • TONI ABRAM
        It is hoped to publish the next issue of Our World, the Information Point newsletter, later this month - thank you to everyone who has submitted stories to
        Message 3 of 3 , Aug 5, 2011
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          It is hoped to publish the next issue of Our World, the Information Point newsletter, later this month - thank you to everyone who has submitted stories to date. 
           
          If you have a story to share, there is still time to get in touch.  If you have been sent a draft for checking prior to publication, don't forget to let us know you are happy with it, as we can't publish without your approval of the final version.
           
          Also, if you are taking part in The Big Sunflower Project for Centronuclear and Myotubular Myopathy remember to let us know how you are getting on and send your photos, as we would love to include stories and photos from some of the people taking part.  The questions below have been put together to get you started but these can just be used as pointers - feel free to be creative and colour outside of the lines if you prefer!   
          • Who are you? 
          • Where do you live?
          • How did you hear about The Big Sunflower Project?
          • What variety of sunflower did you grow? e.g. dwarf or tall and what was it called
          • Why did you grow a sunflower?  e.g. did you grow it because you know someone with centronuclear / myotubular myopathy
          • When did you grow the sunflower?  e.g. what time of year did you start growing it
          • How did you grow your sunflower?  e.g. in pots or sowed directly in garden
          • How tall did your sunflower grow?
          • Have you grown sunflowers before? 
          • What have you learned from growing your sunflowers? 
          • Would you grow a sunflower again?
          • Anything else interesting about your sunflower growing experience?
           
          If your sunflowers haven't flowered yet, don't worry, we are hoping to include more stories in our issue at the end of this year.
           
          Please email your stories to  centronuclear.org@....
           
          Thank you everyone.
           
          Toni Abram
          Founder
          The Information Point for Centronuclear and Myotubular Myopathy
           
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