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Our World: April 2011

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  • TONI ABRAM
    Hello Everyone   The first issue of Our World for 2011 will be published in April and the Information Point is now looking for contributions, which will be
    Message 1 of 2 , Feb 6, 2011
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      Hello Everyone
       
      The first issue of Our World for 2011 will be published in April and the Information Point is now looking for contributions, which will be accepted any time from now.
        
      If you have a story to tell, whatever form of the condition you have, whatever your age and wherever you may be in the world, we want to hear from you, for example fund raising, family get-togethers, maybe you are organising an event or have achieved something you would like to share with the community.  Also, for this issue, which will be the first published in the year of our 10th anniversary we are particularly keen to include some stories of children who have CNM / MTM and were born around 2001.  So if your child is aged around 9 - 11 years old, please get in touch.

      We are also looking for people to take part in our ‘All About Me’ feature, please complete the questionnaire which can be found below and send this to us, including a photo or two if possible.

       

       

      Toni Abram
      Founder
      The Information Point for Centronuclear and Myotubular Myopathy


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

       

      Luke Carter's Air Ambulance Appeal:  

      Help bring Luke home to the UK by donating and/or spreading the word about this appeal at

      www.lukecarterappeal.co.uk/

      and

      www.uk.virginmoneygiving.com/fundraiser-web/fundraiser/showFundraiserProfilePage.action?userUrl=SallyCarter1



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

        

      or 

       

      What form of CNM / MTM does your family member have e.g. dominant, recessive, x-linked, unknown?  

       

       

      2.   When did you first get diagnosed?

       

      or

       

      When did your family member first get diagnosed?

       

       

      3.  What symptoms prompted the diagnosis?

       

       

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

       

       

      5.   How did the diagnosis come about e.g. muscle biopsy?

       

       

      6.   What impact / implications did the diagnosis have on you / your family?  e.g. telling your children, starting a family, genetic counselling, schooling, employment?

       

       

      7.   Have you explained CNM / MTM to family members and what was their reaction?

       

       

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

       

       

      9.  What are your current symptoms?

       

      or

       

      What are your family members current symptoms?

       

       

       

      10.  What treatment are you having / had?

       

      or

       

       What treatment is your family member having / had?

       

       

       

      11.  How did you find a doctor?

       

       

       

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

       

       

       

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

       

        

       

      14.  What advice would you give to someone who has just been diagnosed with CNM / MTM ? 

                                                                                                                                                                      &nbs p;                                          

       

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

       

      or

       

      What’s your family members favourite book / film / music?

       

       

       

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

       

      or

       

      What  did your family member want to be when the were younger / want to be when they are older?  

       

       

       

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

       

       or

       

      What is a favourite / memorable event from your family members childhood?

       

       

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

       

      or

        

      Who do you think has most influenced your family members life and why?

        

       

      19.  What’s the best advice you’ve been given?

       

      or

       

      What’s the best advice your family member has been given?

    • TONI ABRAM
      Hello Everyone   Work on the first issue of Our World for 2011 is now underway.    If you have a story to tell, whatever form of the condition you have,
      Message 2 of 2 , Feb 26, 2011
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        Hello Everyone
         
        Work on the first issue of Our World for 2011 is now underway.
          
        If you have a story to tell, whatever form of the condition you have, whatever your age and wherever you may be in the world, we want to hear from you, for example fundraising, family get-togethers, maybe you are organising an event or have achieved something you would like to share with the community.  Also, for this issue, which will be the first published in the year of our 10th anniversary we are particularly keen to include some stories of children who will be celebrating their 10th birthday this year.

        We also need people to take part in our ‘All About Me’ feature, please complete the questionnaire which can be found below and send this to us, including a photo or two if possible.
         
        The closing date for articles is 25 March.
         

         

        Toni Abram
        Founder
        The Information Point for Centronuclear and Myotubular Myopathy


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

         

        Luke Carter's Air Ambulance Appeal:  

        Help bring Luke home to the UK by donating and/or spreading the word about this appeal at

        www.lukecarterappeal.co.uk/


         

         

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

          

        or 

         

        What form of CNM / MTM does your family member have e.g. dominant, recessive, x-linked, unknown?  

         

         

        2.   When did you first get diagnosed?

         

        or

         

        When did your family member first get diagnosed?

         

         

        3.  What symptoms prompted the diagnosis?

         

         

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

         

         

        5.   How did the diagnosis come about e.g. muscle biopsy?

         

         

        6.   What impact / implications did the diagnosis have on you / your family?  e.g. telling your children, starting a family, genetic counselling, schooling, employment?

         

         

        7.   Have you explained CNM / MTM to family members and what was their reaction?

         

         

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

         

         

        9.  What are your current symptoms?

         

        or

         

        What are your family members current symptoms?

         

         

         

        10.  What treatment are you having / had?

         

        or

         

         What treatment is your family member having / had?

         

         

         

        11.  How did you find a doctor?

         

         

         

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

         

         

         

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

         

          

         

        14.  What advice would you give to someone who has just been diagnosed with CNM / MTM ? 

                                                                                                                                                                        & ;nbs p;                                         

         

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

         

        or

         

        What’s your family members favourite book / film / music?

         

         

         

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

         

        or

         

        What  did your family member want to be when the were younger / want to be when they are older?  

         

         

         

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

         

         or

         

        What is a favourite / memorable event from your family members childhood?

         

         

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

         

        or

          

        Who do you think has most influenced your family members life and why?

          

         

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

         

         

        20.  What’s the best advice you’ve been given?

         

        or

         

        What’s the best advice your family member has been given?

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