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CFSAC Meeting Needs to be Rescheduled for a Two Full Day In-Person Meeting

Discussion in 'Action Alerts and Advocacy' started by Hope123, Dec 9, 2013.

  1. Hope123

    Hope123 Senior Member

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    This is a last minute change partly in response to patients and advocates communicating with CFSAC staff about the confusing registration process for CFSAC this time and the short time (8 days) people had to submit comments or register to watch. The meeting is 2 days - Tuesday and Wednesday (12/10 and 12/11) and is from 12PM - 5PM Eastern Standard Time (Washington DC).

    To convert times/ days: http://www.timeanddate.com/worldclock/converter.html

    As for NOW, ANYONE can watch the meeting from anywhere even if you did NOT register for the meeting.

    Instructions in link; please test your computer per instructions below pre-meeting:

    http://blsmeetings.net/CFSACdec2013/webinarinformation.cfm

    Agenda: http://blsmeetings.net/CFSACdec2013/documents/agenda.pdf

    To submit questions during the meeting, from CFSAC staff directly:

    There will be an opportunity to ask questions (no comments) about topics being
    discussed during the webinar by sending an email to CFSACDec2013@seamoncorporation.com<mailto:CFSACDec2013@seamoncorporation.com>.
    The Committee Chair will select questions and moderate answers from the
    committee beginning at 2:15pm on December 11.

    ________________________________________________________
    Delia, WillowJ and Nielk like this.
  2. Nielk

    Nielk

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    CAA just posted on twitter:

  3. jspotila

    jspotila Senior Member

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    Nancy Lee has provided an update on the plan for tomorrow's meeting, including important changes to public comment:

  4. Denise

    Denise Senior Member

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    re CFSAC public comment 11 Dec 2013 ( posted 10 December 2013, 11:19am eastern time)

    If you are scheduled to give public comment on Wednesday 11 December 2013, please let me know as soon as possible.


    Thanks,

    Denise
    (Feel free to respond here or PM me)
  5. readyforlife

    readyforlife Senior Member

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    CFSAC Dec2013 <CFSACDec2013@seamoncorporation.com>
    6:20 AM (3 hours ago)
    [​IMG]
    [​IMG]
    [​IMG]
    to CFSAC
    [​IMG]
    Greetings:
    Because of a snow storm in the Washington DC area, the Federal Office of Personnel Management has closed all federal govt. offices in DC. This includes the tech support we need for webinars.

    Unfortunately, we cannot have the webinar today. Additionally, we cannot get the CFSAC website updated today.

    We will have the webinar tomorrow (Wed. Dec. 11) beginning at noon ET, IF govt. offices are open. Dr Gailen Marshall, the CFSAC Chair, will work with the committee members at the beginning of the webinar to modify the agenda to accommodate the compressed timeframe.
    We will have public comment tomorrow for those who were scheduled to speak on Wed. Unfortunately, we won’t be able to accommodate the public comments that were scheduled for Tuesday because we cannot confirm with the speakers that they are available for the Wednesday time slot.

    So that we have more time for the Committee to deliberate and discuss, we ask those providing public comment tomorrow to limit their speaking time to 3 minutes.
    If we must cancel the webinar tomorrow (DC doesn’t handle snowy, icy roads well), we will reschedule the CFSAC meeting webinar to occur after the first of the year.

    More info on government closure in DC at www.OPM.gov
    We regret that this has happened. We hope to be on the webinar with you tomorrow!
    Last edited by a moderator: Dec 10, 2013
  6. Nielk

    Nielk

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    Many patients and advocates are upset with the fact that HHS will not replace the meeting to a two day format at another time.

    If you want to voice your concern, you can e-mail Nancy Lee at Nancy.Lee@hhs.gov

    This is the e-mail that I just sent out.

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  7. Hope123

    Hope123 Senior Member

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    Good letter, Nielk.
    Delia and Nielk like this.
  8. jspotila

    jspotila Senior Member

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    Anyone who was scheduled to give public comment today, or who was unable to get a comment slot, I am happy to host your comment on my blog. Email me for details jspotila AT yahoo DOT com.
    Valentijn likes this.
  9. Nielk

    Nielk

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    Delia likes this.
  10. liquid sky

    liquid sky Senior Member

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    How convenient!
    WillowJ likes this.
  11. NotAllInMyHead

    NotAllInMyHead

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    http://thoughtsaboutme.com/2013/12/...heduled-for-a-two-full-day-in-person-meeting/

    Please everybody write to Nancy Lee requesting this with CCs to Sebelius, Koh and Jones:

    Nancy.Lee@hhs.gov
    Kathleen.Sebelius@hhs.gov
    howard.koh@hhs.gov
    Wanda.Jones@hhs.gov
    Delia, slayadragon, Ren and 1 other person like this.
  12. jspotila

    jspotila Senior Member

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    I completely agree! http://www.occupycfs.com/2013/12/10/my-request-to-dr-lee/

    Here's the email I sent to Dr. Lee, copying Dr. Jones:

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  13. barbc56

    barbc56 Senior Member

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    So all they need to do is reschedule the two days! While this may be difficult, it's the least they can do. :bang-head:

    Edit. I woulr rather wait for two days, within a reasonable time period.
  14. Ember

    Ember Senior Member

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    Shades of the May CFSAC meeting:
    Delia and Nielk like this.
  15. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Note: 3 threads on this subject have been merged into this thread.
    Delia, WillowJ, Nielk and 1 other person like this.
  16. Nielk

    Nielk

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    Delia, WillowJ and Ember like this.
  17. Andrew

    Andrew Senior Member

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    I'm afraid that if we don't have it now, this will just drag on until it's time for the next meeting. It was already postponed once.
    caledonia and WillowJ like this.
  18. WillowJ

    WillowJ Senior Member

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    Maybe we could ask for a third meeting in Calendar Year 2014, in addition to the brief one tomorrow.
  19. Nielk

    Nielk

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    Revised agenda for tomorrow's CFSAC meeting.
    https://www.facebook.com/CFIDSAssn/posts/10151914295127108
  20. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    NYC (& RI)
    or maybe 5 over next 2 years.
    WillowJ likes this.

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