OMG! This brought tears to my eyes! I am sooooo excited to meet you all! ShannonMessage 1 of 6 , Apr 4, 2007View SourceOMG! This brought tears to my eyes! I am sooooo excited to meet you all!
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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 1 of 6 , Apr 4, 2007View SourcePlease 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
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.
--- 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
> --- 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
> > Joshua Frase Foundation's get-together. I don't know for sure,
> > wouldn't be surprised if that's the largest group of MTM/CNM
> > members to gather together at one event. We are really excited to
> > so many of you. JFF is sponsoring the event, and Dr. Alan Beggs
> > 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
> > 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
> > couple days!)