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Information Point Newsletter

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  • 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 1 of 20 , Aug 10, 2009
      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 2 of 20 , Oct 25 4:27 AM

        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 3 of 20 , Oct 25 6:15 AM
          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 4 of 20 , Oct 25 6:21 AM
            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 5 of 20 , Feb 6, 2010
              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 6 of 20 , Jun 24, 2010
                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 7 of 20 , Jun 25, 2010
                  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 8 of 20 , Jun 25, 2010
                    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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