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

Re: [Myotubular_Myopathy] Re: MTM/CNM Family Gathering this Friday in Boston

Expand Messages
  • angela huss
    Sarah, I would really like to join you on one of these get togethers. I would like to ask any one of the doctors questions about my condition and my future due
    Message 1 of 6 , Apr 4 6:58 AM
      Sarah,
       
      I would really like to join you on one of these get togethers. I would like to ask any one of the doctors questions about my condition and my future due to me having 2 young daughters that show no sign of having any problems at all. I need to see what are the possiblities with my life & condition since I am 31.  Sincerely, Angie H. Biglerville, PA

      patsarah2006 <patsarah@...> wrote:
      Simone, you may be far away, but in our hearts and minds you all with
      be with us when we get-together on Friday morning in Boston.
      -Pat

      --- In Myotubular_Myopathy @yahoogroups. com, "SIMONE"
      <zacantsim70@ ...> wrote:
      >
      > WOW how amazing to have a get together of so many families. I wish
      > we lived in the States. Unfortunately it is a long way from
      > Australia, but I would love to hear about how great the day was.
      > We are hoping to make it to london for the Myotubular Trust
      > conference this year.
      > Take care
      > simone
      > Australia
      > --- In Myotubular_Myopathy @yahoogroups. com, "patsarah2006"
      > <patsarah@> wrote:
      > >
      > > Well, at the latest head-count I think we have 18 (yes, eighteen!)
      > > MTM/CNM family members attending this Friday morning in Boston at
      > the
      > > Joshua Frase Foundation's get-together. I don't know for sure,
      but
      > I
      > > wouldn't be surprised if that's the largest group of MTM/CNM
      family
      > > members to gather together at one event. We are really excited to
      > meet
      > > so many of you. JFF is sponsoring the event, and Dr. Alan Beggs
      and
      > > Elizabeth Taylor will be attending as well. We are thrilled by the
      > > response. We look forward to a great gathering.
      > >
      > > If there is anyone else who can make it Friday morning that has
      not
      > > RSVP'd to my wife (Sarah) yet, please do so. (PatSarah@)
      > > We would love to meet you too!
      > >
      > > -Pat (in New Jersey.... but soon to be in Boston... well, just
      for
      > a
      > > couple days!)
      > >
      >



      Now that's room service! Choose from over 150,000 hotels
      in 45,000 destinations on Yahoo! Travel
      to find your fit.

    • Shannon Mashinchi
      OMG! This brought tears to my eyes! I am sooooo excited to meet you all! Shannon
      Message 2 of 6 , Apr 4 9:23 AM
        OMG! This brought tears to my eyes! I am sooooo excited to meet you all!

        Shannon



        ____________________________________________________________________________________
        No need to miss a message. Get email on-the-go
        with Yahoo! Mail for Mobile. Get started.
        http://mobile.yahoo.com/mail
      • Spampinato, Rosemary
        Please post what you learned and experienced in Boston. Tell me about the relieft you felt when you meet so many others who shared the heartaches and fear.
        Message 3 of 6 , Apr 4 1:42 PM
          Please post what you learned and experienced in Boston. Tell me about the relieft you felt when you meet so many others who shared the heartaches and fear. Give everyone a hug from us.  We wish we could financially afford to be there.
          Someday I'll meet you all.

          Safe travels
           -----Original Message-----
          From: Myotubular_Myopathy@yahoogroups.com [mailto:Myotubular_Myopathy@yahoogroups.com]On Behalf Of patsarah2006
          Sent: Wednesday, April 04, 2007 7:54 AM
          To: Myotubular_Myopathy@yahoogroups.com
          Subject: [Myotubular_Myopathy] Re: MTM/CNM Family Gathering this Friday in Boston

          Simone, you may be far away, but in our hearts and minds you all with
          be with us when we get-together on Friday morning in Boston.
          -Pat

          --- In Myotubular_Myopathy @yahoogroups. com, "SIMONE"
          <zacantsim70@ ...> wrote:
          >
          > WOW how amazing to have a get together of so many families. I wish
          > we lived in the States. Unfortunately it is a long way from
          > Australia, but I would love to hear about how great the day was.
          > We are hoping to make it to london for the Myotubular Trust
          > conference this year.
          > Take care
          > simone
          > Australia
          > --- In Myotubular_Myopathy @yahoogroups. com, "patsarah2006"
          > <patsarah@> wrote:
          > >
          > > Well, at the latest head-count I think we have 18 (yes, eighteen!)
          > > MTM/CNM family members attending this Friday morning in Boston at
          > the
          > > Joshua Frase Foundation's get-together. I don't know for sure,
          but
          > I
          > > wouldn't be surprised if that's the largest group of MTM/CNM
          family
          > > members to gather together at one event. We are really excited to
          > meet
          > > so many of you. JFF is sponsoring the event, and Dr. Alan Beggs
          and
          > > Elizabeth Taylor will be attending as well. We are thrilled by the
          > > response. We look forward to a great gathering.
          > >
          > > If there is anyone else who can make it Friday morning that has
          not
          > > RSVP'd to my wife (Sarah) yet, please do so. (PatSarah@)
          > > We would love to meet you too!
          > >
          > > -Pat (in New Jersey.... but soon to be in Boston... well, just
          for
          > a
          > > couple days!)
          > >
          >

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