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Re: Get Togethers... Let's have a conference! Who's interested??

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  • reebschar
    what a great idea we would be interested thanks ... it s ... summer ... Jersey ... brainstorming ... various ... This ... posing ...
    Message 1 of 14 , Apr 30, 2006
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      what a great idea
      we would be interested
      thanks

      --- In Myotubular_Myopathy@yahoogroups.com, "pinksarah21"
      <patsarah@...> wrote:
      >
      > Jess, OK, I'll take that as your RSVP for our "SECOND ANNUAL"
      > MTM/CNM conference (i.e., next year!). We'll see you then! :-)
      > Meanwhile, for this year... it's all preliminary, and I know July-
      > August is really just 2-3 months away, but we'll work to see if
      it's
      > doable to get something off the ground this summer, and whatever
      > happens we can always build on it for future events.
      > Meanwhile, we'll need to know who could/would come this year,
      summer
      > 2006??
      > -Pat
      >
      > --- In Myotubular_Myopathy@yahoogroups.com, Jess Juckers
      > <faewyn@> wrote:
      > >
      > > So soon?
      > > I could possibly make it for June/July 2007.
      > > (I am in Australia LOL)
      > > We would then have plenty of time to organise a conference.
      > >
      > > Jess
      > >
      > >
      > > pinksarah21 wrote:
      > > > Hi, Abbie. Great idea! My wife and I have been looking into
      > setting
      > > > up a conference for MTM/CNM families, researchers and
      > physicians.
      > > > Just last week we spoke with Dr. Alan Beggs (Harvard genetics
      > lab),
      > > > Dr. John Bach (MDA pulmonary management specialist at New
      Jersey
      > > > Medical School) and Alison Frase of the the Joshua Frase
      > Foundation.
      > > > It is very preliminary right now, still just in the
      brainstorming
      > > > phase. The basic idea would be to create a setting where
      various
      > > > involved clinicians and researchers could come together and
      > foster
      > > > collaboration on myotubular/centronuclear myopathy (CNM). As
      > parents
      > > > of a child with MTM/CNM, we certainly want parents/families
      > directly
      > > > involved, so that we can learn from medical experts about
      > MTM/CNM,
      > > > and so that we can contribute our own insights/experiences.
      This
      > > > could also be an opportunity for various MTM/CNM families and
      > > > children to get to meet each other. I guess one question would
      > be the
      > > > practical issue of how many families would actually be able to
      > make
      > > > the trip to any one site (most recently we have been speaking
      > with an
      > > > organization that runs conferences related to rehabilitation
      > > > medicine, and they are located in New Jersey). Thus, I am
      posing
      > the
      > > > question to this online group: How many of you could foresee
      > coming
      > > > to a MTM/CNM conference in New Jersey, perhaps during July or
      > August
      > > > 2006??? Please post your answers online. Thanks! -Pat
      > > >
      > > >
      > > >
      > > >
      > > >
      > > >
      > > > SPONSORED LINKS
      > > > Article health wellness
      > > > <http://groups.yahoo.com/gads?
      >
      t=ms&k=Article+health+wellness&w1=Article+health+wellness&w2=Center+f
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      program&w5=Health+wellness+product&w6=Health+and+wellness+job&c=6&s=1
      > 81&.sig=HFCK21385eiVKA-icsCXdg>
      > > > Center for health and wellness
      > > > <http://groups.yahoo.com/gads?
      >
      t=ms&k=Center+for+health+and+wellness&w1=Article+health+wellness&w2=C
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      > c=6&s=181&.sig=d199fxd8Nd9hDHGAPRGZ3w>
      > > > Health and wellness
      > > > <http://groups.yahoo.com/gads?
      >
      t=ms&k=Health+and+wellness&w1=Article+health+wellness&w2=Center+for+h
      >
      ealth+and+wellness&w3=Health+and+wellness&w4=Health+and+wellness+prog
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      ram&w5=Health+wellness+product&w6=Health+and+wellness+job&c=6&s=181&.
      > sig=8Xg1Y8WnIQ8M8RmwiCBfYg>
      > > >
      > > > Health and wellness program
      > > > <http://groups.yahoo.com/gads?
      >
      t=ms&k=Health+and+wellness+program&w1=Article+health+wellness&w2=Cent
      >
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      ess+program&w5=Health+wellness+product&w6=Health+and+wellness+job&c=6
      > &s=181&.sig=o6A_SwJ7NPKV-vbc2guF8g>
      > > > Health wellness product
      > > > <http://groups.yahoo.com/gads?
      >
      t=ms&k=Health+wellness+product&w1=Article+health+wellness&w2=Center+f
      >
      or+health+and+wellness&w3=Health+and+wellness&w4=Health+and+wellness+
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      program&w5=Health+wellness+product&w6=Health+and+wellness+job&c=6&s=1
      > 81&.sig=T568iKLktVX2LzTlHB8xxA>
      > > > Health and wellness job
      > > > <http://groups.yahoo.com/gads?
      >
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      >
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      > 81&.sig=-WO9UjsJlgtYfOHYjcGl9w>
      > > >
      > > >
      > > >
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    • Rosemary and Len Spampinato
      I d like nothing more than a conference on MTM. I will do anything to help. ... Foundation. ... parents ... directly ... the ... an ... the ... August
      Message 2 of 14 , May 16, 2006
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        I'd like nothing more than a conference on MTM. I will do anything to
        help.

        --- In Myotubular_Myopathy@yahoogroups.com, "pinksarah21"
        <patsarah@...> wrote:
        >
        > Hi, Abbie. Great idea! My wife and I have been looking into setting
        > up a conference for MTM/CNM families, researchers and physicians.
        > Just last week we spoke with Dr. Alan Beggs (Harvard genetics lab),
        > Dr. John Bach (MDA pulmonary management specialist at New Jersey
        > Medical School) and Alison Frase of the the Joshua Frase
        Foundation.
        > It is very preliminary right now, still just in the brainstorming
        > phase. The basic idea would be to create a setting where various
        > involved clinicians and researchers could come together and foster
        > collaboration on myotubular/centronuclear myopathy (CNM). As
        parents
        > of a child with MTM/CNM, we certainly want parents/families
        directly
        > involved, so that we can learn from medical experts about MTM/CNM,
        > and so that we can contribute our own insights/experiences. This
        > could also be an opportunity for various MTM/CNM families and
        > children to get to meet each other. I guess one question would be
        the
        > practical issue of how many families would actually be able to make
        > the trip to any one site (most recently we have been speaking with
        an
        > organization that runs conferences related to rehabilitation
        > medicine, and they are located in New Jersey). Thus, I am posing
        the
        > question to this online group: How many of you could foresee coming
        > to a MTM/CNM conference in New Jersey, perhaps during July or
        August
        > 2006??? Please post your answers online. Thanks! -Pat
        >
      • pinksarah21
        Rosemary and Len, Thanks for the interest/support for doing an MTM/CNM conference. My wife is taking a lead on this task, and seeing if it is doable for this
        Message 3 of 14 , May 17, 2006
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          Rosemary and Len, Thanks for the interest/support for doing an MTM/CNM
          conference. My wife is taking a lead on this task, and seeing if it is
          doable for this August or not. We'll post an update once we have
          something to report. If we can swing something this summer, it would
          probably be in northern New Jersey, since we have some connections with
          a medical conference center there, and some physicians who we would
          have come and speak. Not sure this summer is doable on short notice,
          but if not we WILL make this happen at another time. We are committed
          to doing it.
          -Pat

          --- In Myotubular_Myopathy@yahoogroups.com, "Rosemary and Len
          Spampinato" <spampinato15216@...> wrote:
          >
          > I'd like nothing more than a conference on MTM. I will do anything to
          > help.
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