Discussion in 'Fibromyalgia Main Forum' started by QuayMan, Jun 10, 2009.

  1. QuayMan

    QuayMan Member

    I know there is another thread on the poll mentioned in this message.

    But I thought I'd highlight this message to show the background e.g. it's going to be one of 10 polls PANDORA are going to run.
    Marly C. Silverman <>

    June 4, 2009

    Dear Friends,

    As we expand our Advocates Extraordinaire™
    program, a project, which will allow hardcore
    advocates to effectively participating in specific
    grass roots initiatives that are crucially needed in
    our community. We invite you to be part of this grass
    roots initiative.

    Currently, we are in the initial phase, which is to
    recruit individuals to participate. The number one
    requirement we have is that the individual be able to
    provide a more focused level of involvement towards
    any of the initiatives we will present and put in

    The program is flexible in the extent that we
    understand that neuroendocrineimmune disorders
    wax & wane, therefore small teams will be
    established to get tasks accomplished.

    We hope to do this in a very simple format and as
    we go along everyone input will be asked and
    required. I am sure some tweaking will be

    The number one priority of the Advocates
    Extraordinaire™ program is to establish
    Neuroendocrineimmune Disorders Research Centers
    in several geographical locations in the U.S.

    It will require a huge effort from our overall
    community along with focus, sheer resilience and

    On phase one we will run concurrently 10 single
    question polls. The results of these polls will be
    taken to officials of the Centers for Disease &
    Prevention (CDC), to Congress, to the Department of
    Health and Human Services (DHHS), to Social
    Security Administration, and to other interested
    parties & government officials in the state and local

    As we released the first poll yesterday June 4, 2009,
    we ask you to assist us in spreading the word by
    using the text below:

    "For two and half decades the CDC
    direction regarding the CFS research
    program, which includes prevention,
    course of treatment, medical provider
    education and public information has
    been controversial, divisive and spotty
    at best.

    P.A.N.D.O.R.A.- Patient Alliance for
    Neuroendocrineimmune Disorders Organization for
    Research & Advocacy, Inc, a charitable (501 c 3)
    organization advocating for the chronically ill and an
    organization that I support, is launching a
    nationwide & international advocacy alliance with
    strategical partners around the world, for the main
    purpose for the establishment of
    Neuroendocrineimmune Disorders Research Centers
    in the U.S. and overseas.

    This is the first poll of a proposed 10 single poll
    questions. I ask that you participate in the poll link

    P.A.N.D.O.R.A. along with the strategical partners'
    alliance will then take the answer results to the
    CDC, to Congress, to the National Institute of
    Health (NIH), to the Social Security
    Administration, to the Department of Health and
    Human Services (DHHS) officials and other
    interested parties. So please join me, and our
    voices will be stronger.


    Click on the link below to answer the survey.

    Thank you for helping P.A.N.D.O.R.A. and I to bring a
    change and a new direction, so crucially needed in
    the neuroendocrineimmune disorders community of
    suffering. You are making a difference! "

    Next you sign on the bottom of the letter or e-mail
    and that is it, you have already take the first step in
    becoming an Advocate Extraordinaire™! The next
    step is to send me an e-mail at and sign up for the
    project mentioned here – The
    Neuroendocrineimmune Disorders Research Center

    Don't forget to participate in the poll!

    In Good Health and In Beauty,

    Marly (Marla) C. Silverman


  2. simpsons

    simpsons Member

    thank you for posting this looks to be a hardcore push and the community really pulling together

    the ME call for action is just getting louder and louder.

    the slogan is great


    this is how the cancer charities did it they all joined forces and together became strong
  3. skeptik2

    skeptik2 Member

    Go, girl, go!!

    With our help, of course.

    Already signed up.

  4. Rafiki

    Rafiki New Member

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