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Spring CFSAC Speak up about ME event Friday, May 11, 2012

Discussion in 'Action Alerts and Advocacy' started by *GG*, Feb 22, 2012.

  1. *GG*

    *GG* Senior Member

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    Concord, NH
    8:00am until 5:00pm
    D.C. (date not set yet)

    Spread the word!

    It is time to YANK (not tug) the nation's heartstrings again.

    Young People with ME/CFS
    ... JOIN US in Speak Up About ME, to be Invisible No More!

    Washington DC this spring (2012)

    With the participation of young people and their families at the Chronic Fatigue Syndrome Advisory Committee meetings (CFSAC) in Washington D.C. Historically, few young people with ME/CFS have attended the CFSAC meetings.

    Speak Up About ME changes that, as young people with ME/CFS proclaim themselves to be INVISIBLE NO MORE!

    Parents, guardians, and representatives from organizations supporting Speak Up About ME, accompanythe young patients to the Speak Up About ME events in Washington.

    Speak Up About ME also represents young patients who cannot attend due to health, finances or distance, by delivering their testimony via DVD, telephone, e-mails and letters.

    Speak Up About ME wants to empower young people and families, friends and others affected by ME/ CFS to advocate for ourselves and others.

    WHO? - Young People with ME/CFS and their families.

    WHAT? - Speak Up About ME Invisible No More!

    WHERE? - Washington DC, Chronic Fatigue Syndrome Advisory Committee (CFSAC) meeting.

    WHY? - To raise awareness about ME/CFS, that it affects people of all ages, to provide public comment to the CFSAC committee, to be Invisible No More!

    WHEN? - Speak Up About ME will take place again at the spring 2012 CFSAC meeting!

    Physical presence and providing your public comment in person at the CFSAC has great impact and is empowering. Providing your public comment via DVD is also very powerful. Public comment can be provided by phone and in writing by those who are too sick to attend in person. (Contact Speak Up About ME at gmail dot com (all one word, no spaces) for more information.)

    If you are so sick, why are you going to Speak Up About ME?

    Advocacy and empowerment we dont want anyone else to go through what we are going through. By raising awareness, we work to ensure that no one else has to go through this. This is a personal sacrifice and it takes weeks for us to return to our previous level of functioning. And yet, participation is empowering, despite the toll it takes on us.

    What can I tell my school about the event?

    Participating in the CFSAC and/or meeting with Congressional representatives on Capitol Hill are integrated learning experiences (advocacy, public speaking, science, geography, social studies).

    Speak Up
    About ME participants are part of government in action.

    Speak Up About ME welcomes everyone to participate. We especially welcome early onset patients (as well as their families, friends, caregivers, and advocates).

    We gladly welcome mentors, volunteers, supporters, donors.

    JOIN US to Speak Up About ME, and Invisible No More!


    Contact us at Speak Up About ME at gmail dot com (all one word, no
    spaces)

    Here are links to some of the public comment presented in May and
    November 2011 at the CFSAC:

    http://www.hhs.gov/advcomcfs/meetings/presentations/publictestimony_201105_lopezmajano.pdf

    http://www.hhs.gov/advcomcfs/meetings/presentations/publictestimony_201105_jacksonsuzan.pdf

    http://www.hhs.gov/advcomcfs/meetings/presentations/publictestimony_201111_denise.pdf

    http://www.hhs.gov/advcomcfs/meetings/presentations/publictestimony_201111_alexander.pdf

    INFORMATION FOR DONATIONS

    Your contribution(s) help defray costs such as lunches for Speak Up About ME young participants, taxis to/ from Capitol Hill, trading cards, posters, T-shirts, printing, snacks, water, etc. We would very much like to have sufficient funds to help defray lodging expenses for some participants.

    Phoenix Rising is accepting earmarked contributions for Speak Up About ME (thank you PR!). By contributing via Phoenix Rising, you can get a tax-deduction. The (snail) mailing address for Phoenix Rising is (please note there will be an unavoidable delay in processing checks):

    Phoenix Rising c/o Cort Johnson
    1575 Rockcrest Hills Avenue,
    Henderson, NV 89052

    This page on Phoenix Rising has a PayPal button on the left side:

    http://forums.phoenixrising.me/content.php?167

    This is what the PayPal page looks like:

    https://www.paypal.com/us/cgi-bin/
    webscr?cmd=_flow&SESSION=3QuDol5sPEomQB9WVIT0-
    nm3GKoj1RGb9C34EB9VW4qOz4hnBawWwC9AgBK&dispatch=5885d80a13c0db1f8e263663d3faee8d4
    026841ac68a446f69dad17fb2afeca3

    When you have entered your contribution amount (update the amount before entering any other information) and payment information, you get to a page called "Review Your Donation".

    On this page, to the left of the amount you are contributing, is a line that says "Add Special Instructions tothe Seller".

    Click on "Add Special Instructions to the Seller" to open a comment box.

    In that box type in that the contribution is earmarked for Speak Up About ME (please).

    Continue to review your transaction details and finalize your transaction.

    On the email receipt from PayPal it will show what was typed (For Speak Up about ME please) into the "Add Special Instructions to the Seller" box.

    Please contact Phoenix Rising or Speak Up About ME if further clarification is needed.

    RSVP now to speakupaboutme @gmail.com

    - We are in the process of updating the Speak Up About ME website. Please bear with us. -

    http://www.facebook.com/#!/events/297783933617815/?notif_t=event_invite
     
  2. Denise

    Denise Senior Member

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    Thanks for the thread.
    Please join and support us!
    We welcome participants, supporters, volunteers....

    Speak Up About ME - Invisible No More!
    We are working to make this happen!

    Denise
     
    *GG* and justinreilly like this.
  3. Christopher

    Christopher Senior Member

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    Pennsylvania
    I am either planning to go, or if I cannot, to submit video testimony. The more the better!
     
  4. justinreilly

    justinreilly Senior Member

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    NYC (& RI)
    A HUGE Thank You to Denise, all the kids and donors for this very important project!!
     
    *GG* and Denise like this.
  5. *GG*

    *GG* Senior Member

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    4,773
    Concord, NH
    Awesome!

    GG
     
  6. *GG*

    *GG* Senior Member

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    4,773
    Concord, NH
    Working on getting clarification for the date of this event. Please let me know if the correct date, if the 11th is not it.

    thanks!

    GG
     
  7. Denise

    Denise Senior Member

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    Speak Up About ME events will take place on one of the dates of the CFSAC meeting. (I have not seen dates announced yet.) Sorry to be so vague.
    In recent years the spring CFSAC meetings have been in May. Let's hope that is the case again this year.
    Denise
     
    ukxmrv likes this.
  8. mojoey

    mojoey Senior Member

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    Hi Denise: I have a question: how much of our donations (if anything) go to Phoenix Rising and/or Pandora for their fiscal sponsorship? I've only read about donations going through PR & Pandora to "defray costs" but I haven't been able to find any info about what percentage of proceeds actually go to Speak Up 4 ME.
     
  9. Denise

    Denise Senior Member

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    Hi,
    100% of the contribution amount goes to Speak Up About ME - unless otherwise stipulated by the contributor.
    PR and PANDORA are helping us by processing contributions for Speak Up About ME.
    We greatly appreciate their help with this!!!

    I hope that makes things clearer.
    Ask questions, I will do my best to answer them!

    Denise
    Speak Up About ME, Invisible NO More! - We ARE making this happen!
     
    *GG* likes this.
  10. Denise

    Denise Senior Member

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    :oops:
    I goofed.


    The CORRECT snail mail address is:
    Phoenix Rising
    c/o Cort Johnson
    1657 Rockcrest Hills Avenue
    Henderson NV 89052


    I apologize for the error!


    Denise
     

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