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Information Point Newsletter

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  • TONI ABRAM
    Hello Everyone It s that time again - I am now making a start on the next Information Point newsleter, which I am hoping to issue in early August. If you have
    Message 1 of 20 , Mar 2, 2008
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      Hello Everyone
       
      It's that time again - I am now making a start on the next Information Point newsleter, which I am hoping to issue in early August.
       
      If you have would like to include any information for inclusion in this, please get in touch before the end of March.
       
      Looking forward to hearing from you.
       

       

      _________________________________________________________________________________________________________ 

       

       

      The Information Point for Centronuclear and Myotubular Myopathy

      Information ~ Support ~ Awareness

       

      Visit our website at

      www.centronuclear.org.uk 

       

      Read our Latest Newsletter

      www.centronuclear.org.uk/newsletter_december_2007/cnmnews_dec_07.html

       

      The Information Point Online Shop

      www.buy.at/theinformationpoint

         

      Member of the National Council of Voluntary Organisations

      Community Champions Fund Recipient * UnLtd Millenium Awards Scheme Recipient  

       

      This communication is strictly confidential and intended only for the addressee above.  If you are not the named addressee or have received this communication in error please do not read it, but notify us immediately and then delete it from your computer.  The contents must not be disclosed to any other person and you must not take copies of it.  We take reasonable steps to ensure that emails sent by us are tested for software viruses but we do not accept responsibility for any loss or damage which may occur from using this email or any attachment.

       

    • Toni Abram
      Hello Everyone Please find attached a link to the April issue of the Information Point newsletter.
      Message 2 of 20 , Apr 22, 2008
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        Hello Everyone
         
        Please find attached a link to the April issue of the Information Point newsletter.
         
         
        I hope you will enjoy reading the latest news - if you are involved in any events over the coming months, please get in touch, so that these can be featured in the next issue later this year.
         
        Thank you to everyone who has submitted articles this time around.
         
         
        Toni xx 

        The Information Point for Centronuclear and Myotubular Myopathy

        Information ~ Support ~ Awareness

         

        Visit our Website at

        www.centronuclear.org.uk 

         

        The Information Point Online Shop

        www.buy.at/theinformationpoint

         

        Learn About our Design Project

        http://tonilouisa.wordpress.com/

           

        Member of the National Council of Voluntary Organisations

        Community Champions Fund Recipient * UnLtd Millenium Awards Scheme Recipient  

         

        This communication is strictly confidential and intended only for the addressee above.  If you are not the named addressee or have received this communication in error please do not read it, but notify us immediately and then delete it from your computer.  The contents must not be disclosed to any other person and you must not take copies of it.  We take reasonable steps to ensure that emails sent by us are tested for software viruses but we do not accept responsibility for any loss or damage which may occur from using this email or any attachment.

      • TONI ABRAM
        Hello Everyone Just a quick note to say I am making a start on the next Information Point newsletter, which I am hoping to issue mid / late August. It would
        Message 3 of 20 , Jul 15, 2008
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          Hello Everyone
           
          Just a quick note to say I am making a start on the next Information Point newsletter, which I am hoping to issue mid / late August.
           
          It would be great to be able to include some CNM / MTM stories from around the around the world.
           
          Please get in touch if you have any news you would like to share. 
           

           

          _________________________________________________________________________________________________________ 

          The Information Point for Centronuclear and Myotubular Myopathy

          Information ~ Support ~ Awareness

           

          Visit our Website at

          www.centronuclear.org.uk 

           

          Read our Latest Newsletter  

          www.centronuclear.org.uk/theinformationpoint/newsletter_april_08/cnmnews_april_2008.html 

           

          The Information Point Online Shop

          www.buy.at/theinformationpoint

           

          Learn About our Design Project

          http://tonilouisa.wordpress.com/

             

          Member of the National Council of Voluntary Organisations

          Community Champions Fund Recipient * UnLtd Millenium Awards Scheme Recipient

           

          This communication is strictly confidential and intended only for the addressee above.  If you are not the named addressee or have received this communication in error please do not read it, but notify us immediately and then delete it from your computer.  The contents must not be disclosed to any other person and you must not take copies of it.  We take reasonable steps to ensure that emails sent by us are tested for software viruses but we do not accept responsibility for any loss or damage which may occur from using this email or any attachment.

           

        • TONI ABRAM
          Hello Everyone Just a quick note to let you know that I will be starting work on the next Information Point newsletter shortly. If you have any CNM / MTM
          Message 4 of 20 , Oct 17, 2008
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            Hello Everyone
             
            Just a quick note to let you know that I will be starting work on the next Information Point newsletter shortly.
             
            If you have any CNM / MTM related stories that you would like to share, please get in touch.
             
            I am also hoping to run a feature on family gets togethers, so am keen to receive stories and photos for this.  Also, if anyone took part in Jeans for Genes Day, please let me know what you got up to and how much you raised.
             
             

             

            _________________________________________________________________________________________________________ 

             

            The Information Point for Centronuclear and Myotubular Myopathy

            Information ~ Support ~ Awareness

             

            Visit our Website at

            www.centronuclear.org.uk 

             

            Read our Latest Newsletter  

            www.centronuclear.org.uk/theinformationpoint/newsletter_august_2008/cnmnews_august_2008.html 

             

            The Information Point Online Shop

            www.buy.at/theinformationpoint

             

            Learn About our Design Project

            http://tonilouisa.wordpress.com/

               

            Member of the National Council of Voluntary Organisations

            Community Champions Fund Recipient * UnLtd Millenium Awards Scheme Recipient

             

            This communication is strictly confidential and intended only for the addressee above.  If you are not the named addressee or have received this communication in error please do not read it, but notify us immediately and then delete it from your computer.  The contents must not be disclosed to any other person and you must not take copies of it.  We take reasonable steps to ensure that emails sent by us are tested for software viruses but we do not accept responsibility for any loss or damage which may occur from using this email or any attachment.

          • TONI ABRAM
            I will shortly be making a start on the next Information Point newsletter.  The newsletters are nothing without your contributons, so please get in touch with
            Message 5 of 20 , Feb 3 11:32 PM
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              I will shortly be making a start on the next Information Point newsletter.  The newsletters are nothing without your contributons, so please get in touch with your news and stories.
               
              These may be CNM / MTM related, say events or fundraising - last issue, I included some information about family get togethers and it would be great to include some more photos and stories.  Alternatively, you have been involved in a non CNM / MTM related event that you think other people would be able to read about.
               
              If you have something to share, please get in touch.
               
               
              Toni xx
               

               
            • Toni Abram
              Hello Everyone Work is now underway on the next Information Point newsletter. I have already received several pieces for this but cannot stress strongly enough
              Message 6 of 20 , Mar 1, 2009
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                Hello Everyone
                 
                Work is now underway on the next Information Point newsletter. I have already received several pieces for this but cannot stress strongly enough how the newsletters are nothing without your contributions and the value of these in raising awareness of living with CNM / MTM.

                Contributions may be CNM / MTM related, for example events or fundraising that you have been involved in or are currently trying to organise and which you would like to publicise.

                Last issue, I included a feature about family get togethers and it would be great to include some more photos and stories about these. Alternatively, you may have been involved in a non CNM / MTM related event that you think other people would be interested to read about.

                The closing date for submissions will be 1 April 2009, with the newsletter hopefully issued towards the middle of the same month.

                Please do get in touch if you have something to share.
                 
                 
                Toni xx
                 

              • Wendy
                Dear all, Just wanted to share the benefit of my experience with 2 things. Firstly - Zak has suffered dry and red eyes for many years. For the first time, due
                Message 7 of 20 , Mar 2, 2009
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                  Dear all,

                   

                  Just wanted to share the benefit of my experience with 2 things. 

                   

                  Firstly – Zak has suffered dry and red eyes for many years.  For the first time, due to a diligent optician, we had fluorescent drops put into Zak’s eyes, which uncovered ‘ulcerated corneas’ – this is the first time they’ve been highlighted in his 13 years, although Zak does wear light reactor glasses and has suffered repeated eye infections in the past and wakes up with red eyes – or they become increasing red throughout the day which is ‘normal’.  Zak’s eyes were so dry that were desensitized to the pain associated with ulcerated corneas, so as soon as we started to use Lacrilube at night and during the day to begin with, they became redder, more watery and even more sore.  (We already use Viscotears during the day which is clearly not strong enough).  Since then, we were referred to the eye hospital where Zak was given antibiotics (eye ointment) for a week just to cover for any infection, and since then, on their advice, we have given him Lacrilube full time (very safe vasoline type substance with no side effects), and put eye-patches we cut out from regular clingfilm over each eye on alternate nights held down with me-fix tape or micropore tape .  This has made a little ‘humid’ tent over the eye to prevent drying out and actually help retain moisture as he sleeps with his eyes open.

                  This has been really effective, stopped redness and sensitivity and his ulcerations have improved/virtually gone.  I really wished we’d known about lacrilube and the ‘eye patches’ with clingfilm earlier as we hopefully have prevented the ulcerated corneas and eye redness.

                   

                  Regarding Q10 and Magnesium and muscle strength.  I’ve been giving these to Zak for over a month and then decided to stop for a week as a ‘test’, as I wasn’t sure if Zak’s strength had improved because he’d come out the other end of a growth spurt and regained some strength ‘normally’ (ie catching up after a growth spurt/period of weakness).  After a week of stopping, it was apparent that he (gradually at first) became really weak again and very, very tired, so I started again immediately, with almost immediate effect of regaining his strength.  This is not show-stopping regain in strength (pop-eye stuff), but is significant enough for it to be the difference between him barely being able to weight-bear to actually being to regain his former ability to walk 2 – 3 steps independently/with a stick and stand for longer periods without support.  So we’re definitely keeping him on the Q10 (60mg) and Magnesium (150mg), and I’m going to up the dose of both as well and will report back with any new ‘evidence’. 

                   

                  I really hope these will help with your little ones if you’re not doing them already.

                   

                  Wendy

                   

                   

                  -----Original Message-----
                  From: Myotubular_Myopathy@yahoogroups.com [mailto:Myotubular_Myopathy@yahoogroups.com] On Behalf Of Toni Abram
                  Sent:
                  01 March 2009 10:15
                  To: Myotubular_Myopathy@yahoogroups.com
                  Subject: [Myotubular_Myopathy] Information Point Newsletter

                   

                  Hello Everyone

                   

                  Work is now underway on the next Information Point newsletter. I have already received several pieces for this but cannot stress strongly enough how the newsletters are nothing without your contributions and the value of these in raising awareness of living with CNM / MTM.

                  Contributions may be CNM / MTM related, for example events or fundraising that you have been involved in or are currently trying to organise and which you would like to publicise.

                  Last issue, I included a feature about family get togethers and it would be great to include some more photos and stories about these. Alternatively, you may have been involved in a non CNM / MTM related event that you think other people would be interested to read about.

                  The closing date for submissions will be
                  1 April 2009, with the newsletter hopefully issued towards the middle of the same month.

                  Please do get in touch if you have something to share.

                   

                   

                  Toni xx

                   

                • cleibo1
                  Wendy What does the magnesium do? we have spencer on Q10 and have seen an improvement. corey ... the first ... Zak s ... they ve ... reactor ... wakes up ...
                  Message 8 of 20 , Mar 2, 2009
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                    Wendy
                    What does the magnesium do? we have spencer on Q10 and have seen an
                    improvement.
                    corey





                    --- In Myotubular_Myopathy@yahoogroups.com, "Wendy" <wendyhughes@...>
                    wrote:
                    >
                    > Dear all,
                    >
                    >
                    >
                    > Just wanted to share the benefit of my experience with 2 things.
                    >
                    >
                    >
                    > Firstly - Zak has suffered dry and red eyes for many years. For
                    the first
                    > time, due to a diligent optician, we had fluorescent drops put into
                    Zak's
                    > eyes, which uncovered 'ulcerated corneas' - this is the first time
                    they've
                    > been highlighted in his 13 years, although Zak does wear light
                    reactor
                    > glasses and has suffered repeated eye infections in the past and
                    wakes up
                    > with red eyes - or they become increasing red throughout the day
                    which is
                    > 'normal'. Zak's eyes were so dry that were desensitized to the pain
                    > associated with ulcerated corneas, so as soon as we started to use
                    Lacrilube
                    > at night and during the day to begin with, they became redder, more
                    watery
                    > and even more sore. (We already use Viscotears during the day
                    which is
                    > clearly not strong enough). Since then, we were referred to the eye
                    > hospital where Zak was given antibiotics (eye ointment) for a week
                    just to
                    > cover for any infection, and since then, on their advice, we have
                    given him
                    > Lacrilube full time (very safe vasoline type substance with no side
                    > effects), and put eye-patches we cut out from regular clingfilm
                    over each
                    > eye on alternate nights held down with me-fix tape or micropore
                    tape . This
                    > has made a little 'humid' tent over the eye to prevent drying out
                    and
                    > actually help retain moisture as he sleeps with his eyes open.
                    >
                    > This has been really effective, stopped redness and sensitivity and
                    his
                    > ulcerations have improved/virtually gone. I really wished we'd
                    known about
                    > lacrilube and the 'eye patches' with clingfilm earlier as we
                    hopefully have
                    > prevented the ulcerated corneas and eye redness.
                    >
                    >
                    >
                    > Regarding Q10 and Magnesium and muscle strength. I've been giving
                    these to
                    > Zak for over a month and then decided to stop for a week as
                    a 'test', as I
                    > wasn't sure if Zak's strength had improved because he'd come out
                    the other
                    > end of a growth spurt and regained some strength 'normally' (ie
                    catching up
                    > after a growth spurt/period of weakness). After a week of
                    stopping, it was
                    > apparent that he (gradually at first) became really weak again and
                    very,
                    > very tired, so I started again immediately, with almost immediate
                    effect of
                    > regaining his strength. This is not show-stopping regain in
                    strength
                    > (pop-eye stuff), but is significant enough for it to be the
                    difference
                    > between him barely being able to weight-bear to actually being to
                    regain his
                    > former ability to walk 2 - 3 steps independently/with a stick and
                    stand for
                    > longer periods without support. So we're definitely keeping him on
                    the Q10
                    > (60mg) and Magnesium (150mg), and I'm going to up the dose of both
                    as well
                    > and will report back with any new 'evidence'.
                    >
                    >
                    >
                    > I really hope these will help with your little ones if you're not
                    doing them
                    > already.
                    >
                    >
                    >
                    > Wendy
                    >
                    >
                    >
                    >
                    >
                    > -----Original Message-----
                    > From: Myotubular_Myopathy@yahoogroups.com
                    > [mailto:Myotubular_Myopathy@yahoogroups.com] On Behalf Of Toni Abram
                    > Sent: 01 March 2009 10:15
                    > To: Myotubular_Myopathy@yahoogroups.com
                    > Subject: [Myotubular_Myopathy] Information Point Newsletter
                    >
                    >
                    >
                    > Hello Everyone
                    >
                    >
                    >
                    > Work is now underway on the next Information Point newsletter. I
                    have
                    > already received several pieces for this but cannot stress strongly
                    enough
                    > how the newsletters are nothing without your contributions and the
                    value of
                    > these in raising awareness of living with CNM / MTM.
                    >
                    > Contributions may be CNM / MTM related, for example events or
                    fundraising
                    > that you have been involved in or are currently trying to organise
                    and which
                    > you would like to publicise.
                    >
                    > Last issue, I included a feature about family get togethers and it
                    would be
                    > great to include some more photos and stories about these.
                    Alternatively,
                    > you may have been involved in a non CNM / MTM related event that
                    you think
                    > other people would be interested to read about.
                    >
                    > The closing date for submissions will be 1 April 2009, with the
                    newsletter
                    > hopefully issued towards the middle of the same month.
                    >
                    > Please do get in touch if you have something to share.
                    >
                    >
                    >
                    >
                    >
                    > Toni xx
                    >
                    >
                    >
                    >
                    > <http://geo.yahoo.com/serv?
                    s=97359714/grpId=2388254/grpspId=1705061589/msgId
                    > =7020/stime=1235836963/nc1=4025338/nc2=5579900/nc3=5597441>
                    >
                  • TONI ABRAM
                    Hello Everyone Work on the next Information Point newlsletter is due to start shortly, with a planned issue date of August 2009. If you are  involved in any
                    Message 9 of 20 , Jul 9, 2009
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                      Hello Everyone
                       
                      Work on the next Information Point newlsletter is due to start shortly, with a planned issue date of August 2009.
                       
                      If you are  involved in any projects, meetings or get  togethers over the coming months or have any other information you would like to share with the CNM / MTM community, please get in touch.
                       
                       
                       

                      Toni xx
                       

                       
                    • toni.abram1@btopenworld.com
                      Hello Everyone Just a quick reminder that work on the next Information Point newsletter is now underway. Thank you to everyone who has submitted articles so
                      Message 10 of 20 , Aug 10, 2009
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                        Hello Everyone

                        Just a quick reminder that work on the next Information Point newsletter is now underway. Thank you to everyone who has submitted articles so far.

                        There is still time to submit - maybe you have been involved in a project, meeting or get together or will be over the coming months, maybe you have achieved something you would like to share with the community or maybe you have been involved in a fundraising event or something else.

                        Closing date for submissions is 14 August 2009. 


                         Toni xx
                        Sent using BlackBerry® from Orange
                      • TONI ABRAM
                        Work is underway on the next Information Point newsletter, which will be issued in December and I am now looking for articles.     Maybe you have achieved
                        Message 11 of 20 , Oct 25, 2009
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                          Work is underway on the next Information Point newsletter, which will be issued in December and I am now looking for articles.  
                           

                          Maybe you have achieved something that you would like to share with the world, been involved in a fundraising event or are planning an event you would like to publicise, met other families, discovered a new piece of equipment that you think would benefit others or undergone a medical treatment that you would like to tell people about. 

                           

                          If you have a story you would like to share, please send this to me by the end of November for inclusion.

                           

                           

                           

                          Toni

                           

                          The Information Point for Centronuclear and Myotubular Myopathy Information ~ Support ~ Awareness

                           
                          Visit our Website at www.centronuclear.org.uk 

                           
                          Read our Latest Newsletter http://www.centronuclear.org.uk/the_information_point/newsletter_august_2009/cnm_news_august_2009.html  

                          The Information Point Online Shop www.buy.at/theinformationpoint  


                          Member of the National Council of Voluntary Organisations Community Champions Fund Recipient * UnLtd Millenium Awards Scheme Recipient  


                          This communication is strictly confidential and intended only for the addressee above.  If you are not the named addressee or have received this communication in error please do not read it, but notify us immediately and then delete it from your computer.  The contents must not be disclosed to any other person and you must not take copies of it.  We take reasonable steps to ensure that emails sent by us are tested for software viruses but we do not accept responsibility for any loss or damage which may occur from using this email or any attachment.  

                           


                           

                           
                        • talkpod@aol.com
                          can we share academic achievements? ... From: TONI ABRAM To: Myotubular_Myopathy@yahoogroups.com Sent: Sun, Oct 25, 2009 6:27 am
                          Message 12 of 20 , Oct 25, 2009
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                            can we share academic achievements?


                            -----Original Message-----
                            From: TONI ABRAM <toni.abram1@...>
                            To: Myotubular_Myopathy@yahoogroups.com
                            Sent: Sun, Oct 25, 2009 6:27 am
                            Subject: [Myotubular_Myopathy] Information Point Newsletter

                             
                            Work is underway on the next Information Point newsletter, which will be issued in December and I am now looking for articles.  
                             
                            Maybe you have achieved something that you would like to share with the world, been involved in a fundraising event or are planning an event you would like to publicise, met other families, discovered a new piece of equipment that you think would benefit others or undergone a medical treatment that you would like to tell people about. 
                             
                            If you have a story you would like to share, please send this to me by the end of November for inclusion.
                             
                             
                             
                            Toni
                             
                            The Information Point for Centronuclear and Myotubular Myopathy Information ~ Support ~ Awareness
                             
                            Visit our Website at www.centronuclear. org.uk 

                            Member of the National Council of Voluntary Organisations Community Champions Fund Recipient * UnLtd Millenium Awards Scheme Recipient  

                            This communication is strictly confidential and intended only for the addressee above.  If you are not the named addressee or have received this communication in error please do not read it, but notify us immediately and then delete it from your computer.  The contents must not be disclosed to any other person and you must not take copies of it.  We take reasonable steps to ensure that emails sent by us are tested for software viruses but we do not accept responsibility for any loss or damage which may occur from using this email or any attachment.  
                             

                             
                             
                          • toni.abram1@btopenworld.com
                            Absolutely, the newsletter is for and about anyone with CNM / MTM and all stories, no matter how large or small are great. The ideas I gave were just examples.
                            Message 13 of 20 , Oct 25, 2009
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                              Absolutely, the newsletter is for and about anyone with CNM / MTM and all stories, no matter how large or small are great.

                              The ideas I gave were just examples. Other examples might be a child reaching a particular milestone or if anyone wants to include a birthday or special celebration.

                              Photos are always good because they help to illustrate a piece but are not essential.

                              Thank you for asking.

                              Toni xx

                              Sent using BlackBerry® from Orange


                              From: talkpod@...
                              Date: Sun, 25 Oct 2009 09:15:31 -0400
                              To: <Myotubular_Myopathy@yahoogroups.com>
                              Subject: Re: [Myotubular_Myopathy] Information Point Newsletter

                               

                              can we share academic achievements?


                              -----Original Message-----
                              From: TONI ABRAM <toni.abram1@ btopenworld. com>
                              To: Myotubular_Myopathy @yahoogroups. com
                              Sent: Sun, Oct 25, 2009 6:27 am
                              Subject: [Myotubular_ Myopathy] Information Point Newsletter

                               
                              Work is underway on the next Information Point newsletter, which will be issued in December and I am now looking for articles.  
                               
                              Maybe you have achieved something that you would like to share with the world, been involved in a fundraising event or are planning an event you would like to publicise, met other families, discovered a new piece of equipment that you think would benefit others or undergone a medical treatment that you would like to tell people about. 
                               
                              If you have a story you would like to share, please send this to me by the end of November for inclusion.
                               
                               
                               
                              Toni
                               
                              The Information Point for Centronuclear and Myotubular Myopathy Information ~ Support ~ Awareness
                               
                              Visit our Website at www.centronuclear. org.uk 

                              Member of the National Council of Voluntary Organisations Community Champions Fund Recipient * UnLtd Millenium Awards Scheme Recipient  

                              This communication is strictly confidential and intended only for the addressee above.  If you are not the named addressee or have received this communication in error please do not read it, but notify us immediately and then delete it from your computer.  The contents must not be disclosed to any other person and you must not take copies of it.  We take reasonable steps to ensure that emails sent by us are tested for software viruses but we do not accept responsibility for any loss or damage which may occur from using this email or any attachment.  
                               

                               
                               
                            • tonilouisa71
                              Work will shortly begin on the next Information Point newsletter and I am now looking for articles for inclusion. If you have a story to share, the Information
                              Message 14 of 20 , Feb 6 1:43 PM
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                                Work will shortly begin on the next Information Point newsletter and I am now looking for articles for inclusion. If you have a story to share, the Information Point wants to hear from you.

                                Maybe you have been involved in:

                                * planning a fundraising event which you wish to publicise, or being involved in an event which h...as already taken place

                                * academic or creative achievements – say an award, qualification, work displayed somewhere or some other milestone

                                * cnm / mtm family get togethers

                                * involvement in research

                                * discovery of a piece of equipment that has made your life or the life of your child easier

                                Articles from all areas of the community, whatever your age may be, whether you are affected by the x-linked, recessive or dominant form of the condition and from all parts of the world are welcomed.

                                If you have a story you would like to share, please send this to centronuclear.org@... by the beginning of April.

                                Toni
                                http://centronuclear.org.uk
                              • TONI ABRAM
                                Hello Everyone Work will shortly begin on the next Information Point newsletter and I am now looking for articles for inclusion. If you have a story to share,
                                Message 15 of 20 , Jun 24, 2010
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                                  Hello Everyone
                                   
                                  Work will shortly begin on the next Information Point newsletter and I am now looking for articles for inclusion.

                                  If you have a story to share, the Information Point wants to hear from you. Maybe you have been involved in:

                                  * planning a fundraising event which you wish to publicise, or being involved in an event which has already taken place

                                  * academic or creative achievements – say an award, qualification, work displayed somewhere or some other milestone

                                  * cnm / mtm family get togethers

                                  * involvement in research

                                  * discovery of a piece of equipment that has made your life or the life of your child easier

                                  If you would like to take part in our new 'Getting to Know You' feature, please ask for a questionnaire.

                                  There are no strict guidelines about the articles e.g. they don’t have be a certain length or adhere to a set format, the list above is just ideas - it is more important that the submissions are heartfelt and show the diversity of the cnm / mtm community to the big wide world.

                                  The Information Point newsletter cannot exist without your stories, so please do get in touch - articles from all areas of the community, whatever your age, whether you are affected by the x-linked, recessive or dominant form of the condition and from all parts of the world are welcomed. 

                                  If you have a story you would like to share, please contact the Information Point at centronuclear.org@....

                                   

                                   

                                  Toni Abram
                                  The Information Point for Centronuclear and Myotubular Myopathy
                                   



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


                                • Amanda Hollingsworth
                                  Hi Toni, I hope this message finds you doing well. You do such great work for our community - Thank you for that! I have great news: Jacob received an award
                                  Message 16 of 20 , Jun 25, 2010
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                                    Hi Toni, I hope this message finds you doing well. You do such great work for our community - Thank you for that!

                                    I have great news: Jacob received an award for receiving all As and Bs for 2nd grade (actually 1st grade, too). He does so well in school. Do you think doing a blurb or article about him and his accomplishments is something you would be interested in? I think about all the families who have to fight to get an appropriate education for their child(ren) who have special needs, and Jacob is an example of how important that fight is and what is possible for other kids like him.

                                    Let me know!

                                    Thanks again, Amanda

                                    --- On Thu, 6/24/10, TONI ABRAM <toni.abram1@...> wrote:

                                    From: TONI ABRAM <toni.abram1@...>
                                    Subject: [Myotubular_Myopathy] Information Point Newsletter
                                    To: Myotubular_Myopathy@yahoogroups.com
                                    Date: Thursday, June 24, 2010, 4:44 AM



                                    Hello Everyone
                                     
                                    Work will shortly begin on the next Information Point newsletter and I am now looking for articles for inclusion.

                                    If you have a story to share, the Information Point wants to hear from you. Maybe you have been involved in:

                                    * planning a fundraising event which you wish to publicise, or being involved in an event which has already taken place

                                    * academic or creative achievements – say an award, qualification, work displayed somewhere or some other milestone

                                    * cnm / mtm family get togethers

                                    * involvement in research

                                    * discovery of a piece of equipment that has made your life or the life of your child easier

                                    If you would like to take part in our new 'Getting to Know You' feature, please ask for a questionnaire.

                                    There are no strict guidelines about the articles e.g. they don’t have be a certain length or adhere to a set format, the list above is just ideas - it is more important that the submissions are heartfelt and show the diversity of the cnm / mtm community to the big wide world.

                                    The Information Point newsletter cannot exist without your stories, so please do get in touch - articles from all areas of the community, whatever your age, whether you are affected by the x-linked, recessive or dominant form of the condition and from all parts of the world are welcomed. 

                                    If you have a story you would like to share, please contact the Information Point at centronuclear.org@....

                                     

                                     

                                    Toni Abram
                                    The Information Point for Centronuclear and Myotubular Myopathy
                                     



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





                                  • toni.abram1@btopenworld.com
                                    Hello Amanda What great news. Well done Jacob. I think this would make an absolutely perfect story. As you say, it will show how an education is worth
                                    Message 17 of 20 , Jun 25, 2010
                                    • 0 Attachment
                                      Hello Amanda

                                      What great news. Well done Jacob.
                                      I think this would make an absolutely perfect story. As you say, it will show how an education is worth fighting for and how much is possible. Stories like this help to provide good positive role models.

                                      Are you happy to write something? If you wanted to include something about any issues you faced getting to this stage and how you resolved these, this might be interesting too and if you are able to send a photo or two also, these always help to illustrate the articles.

                                      Let me know if you need any more information or help.

                                      Thank you Amanda.

                                      Toni

                                      Sent using BlackBerry® from Orange


                                      From: Amanda Hollingsworth <adhollingsworth0102@...>
                                      Sender: Myotubular_Myopathy@yahoogroups.com
                                      Date: Fri, 25 Jun 2010 05:07:27 -0700 (PDT)
                                      To: <Myotubular_Myopathy@yahoogroups.com>
                                      ReplyTo: Myotubular_Myopathy@yahoogroups.com
                                      Subject: Re: [Myotubular_Myopathy] Information Point Newsletter

                                       

                                      Hi Toni, I hope this message finds you doing well. You do such great work for our community - Thank you for that!

                                      I have great news: Jacob received an award for receiving all As and Bs for 2nd grade (actually 1st grade, too). He does so well in school. Do you think doing a blurb or article about him and his accomplishments is something you would be interested in? I think about all the families who have to fight to get an appropriate education for their child(ren) who have special needs, and Jacob is an example of how important that fight is and what is possible for other kids like him.

                                      Let me know!

                                      Thanks again, Amanda

                                      --- On Thu, 6/24/10, TONI ABRAM <toni.abram1@ btopenworld. com> wrote:

                                      From: TONI ABRAM <toni.abram1@ btopenworld. com>
                                      Subject: [Myotubular_ Myopathy] Information Point Newsletter
                                      To: Myotubular_Myopathy @yahoogroups. com
                                      Date: Thursday, June 24, 2010, 4:44 AM



                                      Hello Everyone
                                       
                                      Work will shortly begin on the next Information Point newsletter and I am now looking for articles for inclusion.

                                      If you have a story to share, the Information Point wants to hear from you. Maybe you have been involved in:

                                      * planning a fundraising event which you wish to publicise, or being involved in an event which has already taken place

                                      * academic or creative achievements – say an award, qualification, work displayed somewhere or some other milestone

                                      * cnm / mtm family get togethers

                                      * involvement in research

                                      * discovery of a piece of equipment that has made your life or the life of your child easier

                                      If you would like to take part in our new 'Getting to Know You' feature, please ask for a questionnaire.

                                      There are no strict guidelines about the articles e.g. they don’t have be a certain length or adhere to a set format, the list above is just ideas - it is more important that the submissions are heartfelt and show the diversity of the cnm / mtm community to the big wide world.

                                      The Information Point newsletter cannot exist without your stories, so please do get in touch - articles from all areas of the community, whatever your age, whether you are affected by the x-linked, recessive or dominant form of the condition and from all parts of the world are welcomed. 

                                      If you have a story you would like to share, please contact the Information Point at centronuclear. org@btinternet. com.

                                       

                                       

                                      Toni Abram
                                      The Information Point for Centronuclear and Myotubular Myopathy
                                       



                                      www.centronuclear. org.uk          |         www.buy.at/theinfor mationpoint





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