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Our World: December 2011

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    Work is now underway on the December issue of Our World. Do you have a story tell? If so, we would love to hear from you. Maybe you have been involved in a
    Message 1 of 1 , Oct 10, 2011
      Work is now underway on the December issue of Our World. Do you have a story tell? If so, we would love to hear from you. Maybe you have been involved in a fundraising event; have experienced something that you think would be of interest or benefit to others; maybe you have achieved something you would like to shout about or maybe you would be interested in writing an opinion piece on something that impacts your life.
      We are also looking for All About Me interviews and to include stories from people who have taken part in The Big Sunflower Project for Centronuclear and Myotubular Myopathy - see notes below for more information.

      Toni Abram
      The Information Point for Centronuclear and Myotubular Myopathy


       http://www.centronuclear.org.uk    http://www.buy.at/cnmmtm 


      The Information Point for Centronuclear and Myotubular Myopathy

      Mosaic Appeal




      The Big Sunflower Project




      All about me


      The Information Point is hoping to publish the next issue of Our World in December 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.
      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.  Something you would change?
      21.  What’s the best advice you’ve been given or what is your philosophy on life?
      The Big Sunflower Project
      As summer is now at an end in the UK we are asking our sunflower growers to think back and tell us all about the positive and not so positive experiences they've had this year growing sunflowers, so these can be included in our end of year newsletter.
      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 you haven't sent your photos yet, don't forget to send these so they can be included in our online photo galleries here on Facebook and on Flickr at http://www.flickr.com/photos/the_big_sunflower_project_for_centronuclear_and_myotubular_myopathy/.  Photos and stories can be emailed to centronuclear.org@....
      And even though here in the UK, our days are getting colder, we would love for The Big Sunflower Project to continue over the coming months in countries that are soon to get their summer.  If you are south of the equator, please consider buying a packet seeds and joining in and we will continue to post all photos we receive.
      Thank you everyone.

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