Loading ...
Sorry, an error occurred while loading the content.

Information Point Newsletter

Expand Messages
  • 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 1 of 20 , Mar 1, 2009
    • 0 Attachment
      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 2 of 20 , Mar 2, 2009
      • 0 Attachment

        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 3 of 20 , Mar 2, 2009
        • 0 Attachment
          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 4 of 20 , Jul 9, 2009
          • 0 Attachment
            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 5 of 20 , Aug 10 3:25 AM
            • 0 Attachment
              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 6 of 20 , Oct 25, 2009
              • 0 Attachment

                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 7 of 20 , Oct 25, 2009
                • 0 Attachment
                  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 8 of 20 , Oct 25, 2009
                  • 0 Attachment
                    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 9 of 20 , Feb 6, 2010
                    • 0 Attachment
                      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 10 of 20 , Jun 24, 2010
                      • 0 Attachment
                        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 11 of 20 , Jun 25, 2010
                        • 0 Attachment
                          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 12 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





                          Your message has been successfully submitted and would be delivered to recipients shortly.