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Re: Contact updates

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  • Dana
    Hi Connie!! My son Cason is 4 1/2 years old and has MTM. I know that you are probably real busy putting this conference together, but I was wondering if you
    Message 1 of 3 , Nov 18, 2007
      Hi Connie!! My son Cason is 4 1/2 years old and has MTM. I know that
      you are probably real busy putting this conference together, but I
      was wondering if you could explain to me what the conference is
      exactly. I am clueless. I want to do everthing I can to help Cason
      and if this is something that we can benefit from then I definately
      want to be involved in it. So, when you have the time I would love to
      know more about it. Thank you. Dana
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      --- In Myotubular_Myopathy@yahoogroups.com, connie guinn
      <kookla_g@...> wrote:
      >
      > Hello, everybody!
      >
      > Let me introduce myself to those of you who don't
      > already know me. My name is Connie Guinn, and my son,
      > Benjamin lives with x-linked Myotubular Myopathy.
      >
      > I am writing to encourage all of you to enter your
      > contact information under the database tab of the MTM
      > Yahoo group, if you have not already done so.
      > For those of you who have entered your information,
      > please check to make sure that it is still current.
      >
      > I am pleased to announce that planning is underway for
      > the first annual CNM/MTM family conferences for the
      > US! In planning for this conference, we want to
      > include your input, but we need a way to contact you,
      > first. This is why it is critical for you to add to
      > and/or update your contact information. If you are
      > not comfortable having this information posted on the
      > Yahoo group database, you can email me directly at
      > kookla_g@...
      >
      > We will be putting together some opinion polls soon
      > that we would like for you to fill out and send back
      > to us, so we can begin the planning stages for the
      > conference. If anyone is interested in helping to
      > coordinate this conference with us, please let me
      > know. This is your conference, and we welcome your
      > input!
      >
      > Be watching for the opinion polls to come within the
      > next few weeks! We are excited about this exciting
      > opportunity to put together a CNM/MTM family
      > conference!!!
      >
      > Thank you, on behalf of the CNM/MTM Family Conference
      > Planning Committee!
      >
      > Sincerely,
      > Connie Guinn
      >
      >
      >
      > __________________________________________________
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