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News from the Netherlands

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  • jacqschadee
    Hello everyone, I haven t written in a while but I am still following your news everyday. I hope Connor is doing better now and we wish Mason a happy late
    Message 1 of 10 , Jun 29, 2006
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      Hello everyone,

      I haven't written in a while but I am still following your news everyday. I hope Connor is
      doing better now and we wish Mason a happy late Birthday. I just wanted to let you know
      that:

      A) We had a very special meeting in the Netherlands last Saturday, where FOURTEEN (!)
      parents with children with MTM met (i.e., the parents of seven children, of whom five
      unfortunately have passed away over the last 1,5 year).

      Amazingly enough, since January four children with MTM were born in our country, which
      is probably not bigger than New Jersey. When Ingo was born in 2004, doctors said there
      was only one new MTM-baby every two years here. I never believed this, as there is no
      national authority that keeps track of the babies with rare diseases. I just wonder if there
      is a reason for this MTM-explosion in Holland. Maybe it's just that parents have more
      easily access to the internet now and meet each other at forums, like the one of the Dutch
      Muscle Disease Association (VSN).

      Anyway, however sad the occassion it was wonderful to meet up with all the fellow
      parents. We shared pictures and talked about our experiences, just like we/you do here on
      the web: "Did your son have big ears as well (yes, all of them), do you experience any
      muscle weakness yourself (no), was he born too early or too late, what about the future,
      etc!." We are going to meet up in October again, in the city of Utrecht, all of you are
      welcome too, of course!

      B) The other news is that I am pregnant, 20 weeks now. We have no way of testing
      whether this new baby is healthy (as no mutation has been found), so it is just a matter of
      hoping and praying and thinking positive!!!

      All the best for everyone, big or small,

      Jacqueline & Robert
      ingo
    • pinksarah21
      Jacqueline & Robert, 1) First of all, Congrats on your pregnancy; we will all be praying and rooting for you for smooth sailing for you and for a happy,
      Message 2 of 10 , Jun 29, 2006
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        Jacqueline & Robert,
        1) First of all, Congrats on your pregnancy; we will all be praying
        and rooting for you for smooth sailing for you and for a happy,
        healthy baby!.
        2) You make an important point about the uncertainty of what the
        risk is or is not for cases like your family's (and ours) where the
        gene has not yet been identified (i.e., cases that test negative for
        the x-linked MTM-1 gene). This shows one important aspect of why
        genetic testing is important for all people with MTM/CNM, and why it
        is also important for those who test negative for MTM1 to hook up
        with a research lab (e.g. Dr. Alan Beggs at Harvard/Boston, etc) so
        that the researchers can find the responsible gene in our families.
        3) It is FANTASTIC that you guys are getting together. I foresee us
        getting similar things underway in the USA. Thanks for leading the
        way and setting such an inspiring example. Keep us posted. You may
        want to invite one of the researchers from Paris to come join your
        group to share the latest goings-on and to learn from the valuable
        perspectives that we as parents have to offer. Just a thought.
        4) Again, double congrats: first on the pregnancy and second on the
        great MTM networking you folks are doing!
        -Pat
      • nadine schwendimann
        congratulations to your pregnancy .... the most beautiful thing in the world :-) i m planning to come to your meeting... please let us know more, when you have
        Message 3 of 10 , Jun 30, 2006
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          congratulations to your pregnancy .... the most beautiful thing in the world :-)
           
          i'm planning to come to your meeting... please let us know more, when you have the details.
           
          best wishes
           
          nadine & family

          jacqschadee <jschadee@...> schrieb:
          Hello everyone,

          I haven't written in a while but I am still following your news everyday. I hope Connor is
          doing better now and we wish Mason a happy late Birthday. I just wanted to let you know
          that:

          A) We had a very special meeting in the Netherlands last Saturday, where FOURTEEN (!)
          parents with children with MTM met (i.e., the parents of seven children, of whom five
          unfortunately have passed away over the last 1,5 year).

          Amazingly enough, since January four children with MTM were born in our country, which
          is probably not bigger than New Jersey. When Ingo was born in 2004, doctors said there
          was only one new MTM-baby every two years here. I never believed this, as there is no
          national authority that keeps track of the babies with rare diseases. I just wonder if there
          is a reason for this MTM-explosion in Holland. Maybe it's just that parents have more
          easily access to the internet now and meet each other at forums, like the one of the Dutch
          Muscle Disease Association (VSN).

          Anyway, however sad the occassion it was wonderful to meet up with all the fellow
          parents. We shared pictures and talked about our experiences, just like we/you do here on
          the web: "Did your son have big ears as well (yes, all of them), do you experience any
          muscle weakness yourself (no), was he born too early or too late, what about the future,
          etc!." We are going to meet up in October again, in the city of Utrecht, all of you are
          welcome too, of course!

          B) The other news is that I am pregnant, 20 weeks now. We have no way of testing
          whether this new baby is healthy (as no mutation has been found), so it is just a matter of
          hoping and praying and thinking positive!!!

          All the best for everyone, big or small,

          Jacqueline & Robert
          ingo



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        • DARLENE MILLER
          Hi Jacqueline and Robert, Congrats on your pregnancy!!! We are so happy for you. We will pray that everything goes smoothly. Take care of yourself and keep
          Message 4 of 10 , Jun 30, 2006
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            Hi Jacqueline and Robert,
             
            Congrats on your pregnancy!!!  We are so happy for you.  We will pray that everything goes smoothly.  Take care of yourself and keep us posted. 
             
            Connor is doing better than expected.  He is due to come home next week.  Kyle is getting very excited about it. 
             
            Love,
            Darlene and Kyle
             
             
             
             
            ----- Original Message -----
            Sent: Thursday, June 29, 2006 3:42 AM
            Subject: [Myotubular_Myopathy] News from the Netherlands

            Hello everyone,

            I haven't written in a while but I am still following your news everyday. I hope Connor is
            doing better now and we wish Mason a happy late Birthday. I just wanted to let you know
            that:

            A) We had a very special meeting in the Netherlands last Saturday, where FOURTEEN (!)
            parents with children with MTM met (i.e., the parents of seven children, of whom five
            unfortunately have passed away over the last 1,5 year).

            Amazingly enough, since January four children with MTM were born in our country, which
            is probably not bigger than New Jersey. When Ingo was born in 2004, doctors said there
            was only one new MTM-baby every two years here. I never believed this, as there is no
            national authority that keeps track of the babies with rare diseases. I just wonder if there
            is a reason for this MTM-explosion in Holland. Maybe it's just that parents have more
            easily access to the internet now and meet each other at forums, like the one of the Dutch
            Muscle Disease Association (VSN).

            Anyway, however sad the occassion it was wonderful to meet up with all the fellow
            parents. We shared pictures and talked about our experiences, just like we/you do here on
            the web: "Did your son have big ears as well (yes, all of them), do you experience any
            muscle weakness yourself (no), was he born too early or too late, what about the future,
            etc!." We are going to meet up in October again, in the city of Utrecht, all of you are
            welcome too, of course!

            B) The other news is that I am pregnant, 20 weeks now. We have no way of testing
            whether this new baby is healthy (as no mutation has been found), so it is just a matter of
            hoping and praying and thinking positive!!!

            All the best for everyone, big or small,

            Jacqueline & Robert
            ingo

          • Wendy
            Hi Darlene. So pleased to hear about little Connor. we ve really been thinking of him while in hospital - so this is great news! I really hope that things go
            Message 5 of 10 , Jun 30, 2006
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              Hi Darlene.  </

              (Message over 64 KB, truncated)

            • Gary Beck
              Hiya, Hope everything went well today and you can actually read this e-mail. Boy, I bet it was hot for you all. We have been at Martin House this weekend so
              Message 6 of 10 , Jul 2, 2006
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                Hiya,

                Hope everything went well today and you can actually read this e-mail. Boy,
                I bet it was hot for you all. We have been at Martin House this weekend so
                couldn't wish you good luck :-( (Internet very hit and miss and most sites
                inc hotmail are restricted). I DID try and send you a good luck message but
                don't think it actually sent it.

                Anyway hope you all did well and will speak soon.

                Have a glass for us !!!!!

                Best wishes

                Gary, Jill, Hayley and Harry
              • Wendy
                Hi Gary, Jill, Hayley and Harry The 10K run was extremely HOT (35 deg C measured when we got to the car!!). but great fun and enjoyed by all!! Hopefully we ll
                Message 7 of 10 , Jul 3, 2006
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                  Hi Gary, Jill, Hayley and Harry

                   

                  The 10K run was extremely HOT (35 deg C measured when we got to the car!!)… but great fun and enjoyed by all!!  Hopefully we’ll have raised a fair sum for the Myotubular Trust and to finding a cure for MTM…..  Will post pictures on the website soon.

                   

                  Thank

                  (Message over 64 KB, truncated)

                • Anne McAuliffe
                  Thanks from me too Gary. WE had the most amazing day - 100 people, some of them strangers to us, out there busting a gut to find a cure for our boys. So many
                  Message 8 of 10 , Jul 3, 2006
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                    Thanks from me too Gary. WE had the most amazing day - 100 people, some of
                    them strangers to us, out there busting a gut to find a cure for our boys.
                    So many of them have emailed us today to say please let me be involved
                    again! Gulp!
                    Anne
                    x

                    -----Original Message-----
                    From: Myotubular_Myopathy@yahoogroups.com
                    [mailto:Myotubular_Myopathy@yahoogroups.com] On Behalf Of Gary Beck
                    Sent: 02 July 2006 20:52
                    To: Myotubular_Myopathy@yahoogroups.com
                    Subject: RE: [Myotubular_Myopathy] Connor coming home..

                    Hiya,

                    Hope everything went well today and you can actually read this e-mail. Boy,

                    I bet it was hot for you all. We have been at Martin House this weekend so

                    couldn't wish you good luck :-( (Internet very hit and miss and most sites

                    inc hotmail are restricted). I DID try and send you a good luck message but

                    don't think it actually sent it.

                    Anyway hope you all did well and will speak soon.

                    Have a glass for us !!!!!

                    Best wishes

                    Gary, Jill, Hayley and Harry






                    Yahoo! Groups Links
                  • Gary Beck
                    Message 9 of 10 , Jul 3, 2006
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                      >From: "Anne McAuliffe" <anne@...>
                      >Reply-To: Myotubular_Myopathy@yahoogroups.com
                      >To: <Myotubular_Myopathy@yahoogroups.com>
                      >Subject: RE: [Myotubular_Myopathy] Connor coming home..
                      >Date: Mon, 3 Jul 2006 15:19:14 +0100
                      >
                      >Thanks from me too Gary. WE had the most amazing day - 100 people, some of
                      >them strangers to us, out there busting a gut to find a cure for our boys.
                      >So many of them have emailed us today to say please let me be involved
                      >again! Gulp!
                      >Anne
                      >x
                      >
                      >-----Original Message-----
                      >From: Myotubular_Myopathy@yahoogroups.com
                      >[mailto:Myotubular_Myopathy@yahoogroups.com] On Behalf Of Gary Beck
                      >Sent: 02 July 2006 20:52
                      >To: Myotubular_Myopathy@yahoogroups.com
                      >Subject: RE: [Myotubular_Myopathy] Connor coming home..
                      >
                      >Hiya,
                      >
                      >Hope everything went well today and you can actually read this e-mail.
                      >Boy,
                      >
                      >I bet it was hot for you all. We have been at Martin House this weekend
                      >so
                      >
                      >couldn't wish you good luck :-( (Internet very hit and miss and most
                      >sites
                      >
                      >inc hotmail are restricted). I DID try and send you a good luck message
                      >but
                      >
                      >don't think it actually sent it.
                      >
                      >Anyway hope you all did well and will speak soon.
                      >
                      >Have a glass for us !!!!!
                      >
                      >Best wishes
                      >
                      >Gary, Jill, Hayley and Harry
                      >
                      >
                      >
                      >
                      >
                      >
                      >Yahoo! Groups Links
                      >
                      >
                      >
                      >
                      >
                      >
                      >
                    • jonnynomates1
                      Hello I ran as well for my late Archie and met up with Anne and Wendy before hand, I wouldnt say it was hot, scorchio scorchio would be more like it, I had a
                      Message 10 of 10 , Jul 4, 2006
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                        Hello

                        I ran as well for my late Archie and met up with Anne and Wendy
                        before hand, I wouldnt say it was hot, scorchio scorchio would be
                        more like it, I had a fantastic time and I didnt think I would enjoy
                        running 10k so much.

                        definitely will run again.






                        --- In Myotubular_Myopathy@yahoogroups.com, "Wendy"
                        <wendyhughes@...> wrote:
                        >
                        > Hi Gary, Jill, Hayley and Harry
                        >
                        > The 10K run was extremely HOT (35 deg C measured when we got to the
                        > car!!). but great fun and enjoyed by all!! Hopefully we'll have
                        raised
                        > a fair sum for the Myotubular Trust and to finding a cure for
                        MTM...
                        > Will post pictures on the website soon.
                        >
                        > Thanks for your good wishes.
                        > Lots of love
                        > Wendy xx
                        >
                        > -----Original Message-----
                        > From: Myotubular_Myopathy@yahoogroups.com
                        > [mailto:Myotubular_Myopathy@yahoogroups.com] On Behalf Of Gary Beck
                        > Sent: 02 July 2006 20:52
                        > To: Myotubular_Myopathy@yahoogroups.com
                        > Subject: RE: [Myotubular_Myopathy] Connor coming home..
                        >
                        > Hiya,
                        >
                        > Hope everything went well today and you can actually read this e-
                        mail.
                        > Boy,
                        > I bet it was hot for you all. We have been at Martin House this
                        weekend
                        > so
                        > couldn't wish you good luck :-( (Internet very hit and miss and
                        most
                        > sites
                        > inc hotmail are restricted). I DID try and send you a good luck
                        message
                        > but
                        > don't think it actually sent it.
                        >
                        > Anyway hope you all did well and will speak soon.
                        >
                        > Have a glass for us !!!!!
                        >
                        > Best wishes
                        >
                        > Gary, Jill, Hayley and Harry
                        >
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