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H.RES.335 National EB Awareness Week

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  • Gena
    Hi, everyone - Many of you will have received an email from me, but for those who did not... Would you be so kind as to email me at otm@rogers.com
    Message 1 of 2 , Oct 3, 2006
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      Hi, everyone - Many of you will have received an email from me, but
      for those who did not... Would you be so kind as to email me at
      otm@... <mailto:otm@...> and let me know your zip code,
      and the state you live in? I'm going to put the info on a
      spreadsheet... and here's why... Now that the Senate Resolution
      S.RES180 for National EB Awareness Week has passed unanimously in the
      Senate, I have it on good authority that we have a decent chance of
      getting the House Bill H.RES.335 to a vote during the "lame-duck
      session" in November. We have an even better chance if we can get 15
      more co-sponsors. We have about a month to do this! A woman who
      volunteered to write letters earlier this year with the group I put
      together, Barbara Stowe, lives near D.C. She is willing to hand-deliver
      your letter to your congressperson (essentially acting as your
      representative for a face-to-face), and also tell them about her
      grandson who has EB, give them some informational resources, and
      hopefully get their sponsorship on the Bill. I talked to her today, and
      she's excited to help. She's well-spoken, and she was a lobbyist "back
      in the day." I'm going to track this, to ensure that we have as good a
      chance as possible. So, once I know your zip code I will
      cross-reference it with our list of co-sponsors, and if your
      congressperson has not yet co-sponsored, we'll put them on the list for
      a face-to-face with Barbara. I will also ask you to write an email to
      your congressperson that you will send to Barbara, explaining how EB has
      impacted your family. Nothing long, just talking about EB's impact, and
      asking them to co-sponsor H.RES.335. I can even give you a basic letter
      to use for reference. Then, we'll follow up with them to ensure we get
      a "yes" or "no" answer. Barbara can call them locally, speak to the
      Legislative Aide on Health for that congressperson, and bug them, in a
      nice way! I will also give you the local office address and phone #s
      for your congressperson, and you can contact them (if you haven't
      already) for added oomph! You can let me know how that is going, and I
      can track that, too. So, please let me know if you can help us with
      this! Thanks so much! Gena


      [Non-text portions of this message have been removed]
    • Laily Haikal
      95832, California Gena wrote: Hi, everyone - Many of you will have received an email from me, but for those who did not... Would you
      Message 2 of 2 , Oct 3, 2006
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        95832, California

        Gena <otm@...> wrote: Hi, everyone - Many of you will have received an email from me, but
        for those who did not... Would you be so kind as to email me at
        otm@... <mailto:otm@...> and let me know your zip code,
        and the state you live in? I'm going to put the info on a
        spreadsheet... and here's why... Now that the Senate Resolution
        S.RES180 for National EB Awareness Week has passed unanimously in the
        Senate, I have it on good authority that we have a decent chance of
        getting the House Bill H.RES.335 to a vote during the "lame-duck
        session" in November. We have an even better chance if we can get 15
        more co-sponsors. We have about a month to do this! A woman who
        volunteered to write letters earlier this year with the group I put
        together, Barbara Stowe, lives near D.C. She is willing to hand-deliver
        your letter to your congressperson (essentially acting as your
        representative for a face-to-face), and also tell them about her
        grandson who has EB, give them some informational resources, and
        hopefully get their sponsorship on the Bill. I talked to her today, and
        she's excited to help. She's well-spoken, and she was a lobbyist "back
        in the day." I'm going to track this, to ensure that we have as good a
        chance as possible. So, once I know your zip code I will
        cross-reference it with our list of co-sponsors, and if your
        congressperson has not yet co-sponsored, we'll put them on the list for
        a face-to-face with Barbara. I will also ask you to write an email to
        your congressperson that you will send to Barbara, explaining how EB has
        impacted your family. Nothing long, just talking about EB's impact, and
        asking them to co-sponsor H.RES.335. I can even give you a basic letter
        to use for reference. Then, we'll follow up with them to ensure we get
        a "yes" or "no" answer. Barbara can call them locally, speak to the
        Legislative Aide on Health for that congressperson, and bug them, in a
        nice way! I will also give you the local office address and phone #s
        for your congressperson, and you can contact them (if you haven't
        already) for added oomph! You can let me know how that is going, and I
        can track that, too. So, please let me know if you can help us with
        this! Thanks so much! Gena

        [Non-text portions of this message have been removed]






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