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What are the active groups?

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  • Nadereh
    My husband and I have just learned that our son, Nico 2 and 1/4, has Angelman Syndrome. We noticed below that there is a DC Angelman s group but it is
    Message 1 of 3 , Sep 26, 2003
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      My husband and I have just learned that our son, Nico 2 and 1/4, has
      Angelman Syndrome. We noticed below that there is a DC Angelman's
      group but it is invitation only. Can anyone here recommend a group
      that is fairly active and tell us how to join? Thank you very much,
      Nadereh and Jay Lee
    • Kathy Leonard
      Hi, By active group it sounds like you mean in person? Or are you talking about on the internet? I ve never heard of a group like the one that is in DC that is
      Message 2 of 3 , Sep 26, 2003
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        Hi,
        By active group it sounds like you mean in person? Or are you talking about on the internet? I've never heard of a group like the one that is in DC that is invitation only. You can either call the Angelman Syndrome Foundation and ask, or I would be more than happy to check into it for you. Are you looking for local support? There is the listserve via the internet that is very active that you can get to off the main ASF page.

        Let me know and i'll hook you up with someone.



        Kathy
        Mandy 11yrs. ube3a, Angie 6yrs. ube3a, and rocky 2yrs ube3a

        Warren, MI

        Http://www.geocities.com/candlecrazy_1999/girlswebpage.html






        ---------------------------------
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        [Non-text portions of this message have been removed]
      • Nadereh
        Hi Kathy, thanks for responding. I *was* talking about getting hooked up with groups on both the internet and in-person. When I did a search for Angelman
        Message 3 of 3 , Sep 27, 2003
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          Hi Kathy, thanks for responding.

          I *was* talking about getting hooked up with groups on both the
          internet and in-person. When I did a search for Angelman Syndrome
          internet groups under Yahoo Groups, I got this group and a few
          others. One of those was a DC area group but it was invitation
          only. I've no idea how to contact them. I was thinking I might try
          through the Maryland contact from the Angelman Syndrome Foundation.
          Also, I'll try to get on the Foundation's listserve as you
          suggested. I believe I can do it by contacting info@...,
          right? That should get us started in terms of support.

          Right now we're kind of reeling but that's how we felt when he was
          diagnosed with CP too and it eventually subsided. We were really
          looking forward to hearing him talk in the next year or so and we're
          going to have to readjust a lot of expectations as all AS parents
          have to do. Ah well, we're just at the beginning of this journey and
          Nico, of course, is as happy as ever. Thank God for the little guy,
          he's such a blessing. Thanks again, --Nadereh

          --- In familiesofangelmansyndrome@yahoogroups.com, Kathy Leonard
          <candlecrazy_1999@y...> wrote:
          > Hi,
          > By active group it sounds like you mean in person? Or are you
          talking about on the internet? I've never heard of a group like the
          one that is in DC that is invitation only. You can either call the
          Angelman Syndrome Foundation and ask, or I would be more than happy
          to check into it for you. Are you looking for local support? There
          is the listserve via the internet that is very active that you can
          get to off the main ASF page.
          >
          > Let me know and i'll hook you up with someone.
          >
          >
          >
          > Kathy
          > Mandy 11yrs. ube3a, Angie 6yrs. ube3a, and rocky 2yrs ube3a
          >
          > Warren, MI
          >
          > Http://www.geocities.com/candlecrazy_1999/girlswebpage.html
          >
          >
          >
          >
          >
          >
          > ---------------------------------
          > Do you Yahoo!?
          > The New Yahoo! Shopping - with improved product search
          >
          > [Non-text portions of this message have been removed]
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