Monday, July 11, 2011

7-20-2011 Agenda

Please print your own copy of the agenda and review the "attachments" to assist in cross-infection control! 

Anyone calling in needs to do so AHEAD of time. We've asked that call-in or WebEx members get set up 10 minutes before the scheduled meeting time. 

Advisory Council visitors are welcome; however, attendees must respect the CF Center at Stanford cross infection guidelines. Please do not attend if you have an active viral infection or any other contagious condition. If you have CF, keep three feet between yourself and others who have CF. Avoid shaking hands with others. Additionally, individuals with CF who have ever had a confirmed positive sputum culture for Burkholderia cepacia (B. cepacia) or who have cultured Methicillin-resistant Staphylococcus aureus (MRSA) within the past two years, or who are currently culturing a bacterium resistant to all antibiotics (pan resistant) may not attend our sessions in person due to the cross-infection risks to others with CF. Please see the "To attend this meeting via WebEx" section at the bottom of this agenda if you wish to attend this month's meeting via WebEx.

The Stanford Adult Cystic Fibrosis Advisory Council Agenda
Meeting Date/Time: Wednesday, July 20th, 2011 from 5:00 – 7:00 P.M.
Location: Blake Wilbur Conference Room

  1. Distribution of Hospital form "Help us, Help you" – Nerissa (Interim Patient Care Manager for B3/C3)
      - revised and emailed to Eric (6/20) and will be updated on our website soon:  
  2. The yearly Election of ACFAC Officers is scheduled for September in our bylaws (page 3).
    - Colleen, Erika, and Kriss were elected December 15th, 2010. Laura was elected May 18th, 2011.
    - Discuss how we want to handle election timing from here?
    - VOTE: do we change the bylaws?
  3. Revised bylaws with attendance change and more. REVIEW FILE:
    VOTE: to approve the new bylaws and post on ACFAC website?
  4. Zoe Davies wrote and requested updates (one short paragraph maximum) from the adult and pediatric advisory boards for the CF newsletter:
    How about something like this for our ACFAC?
    In the Adult CF Advisory Council's (ACFAC) first years, they've successfully encouraged the new Adult CF Center to start an Adult CF Support Group and created forms to give patients tools to communicate their medical routine and wishes to the CF team. The ACFAC asks that adult CF patients and their families contact the council and make use of this unique resource and avenue for direct communication.
    How to Contact the Stanford Adult CF Advisory Council:
    Phone: (650) 549-5102 
    VOTE: approve this blurb for the CF newsletter?  
  5. Our August 2011 ACFAC Current Member list (13 members total):
    Note: A quorum is defined as 50% + 1 voting members. We have 12 voting members. So, at each meeting, we need at least 7 voting members present.
    Kriss (Chairperson)
    Laura (Vice Chairperson)
    Colleen (Membership Chairperson)
    Erika (Secretary)
    Lizeth (non-voting member)
  6. Advising the CF Clinic
       -  update: research physician variability vs. individual doctoring, statistics for patient outcomes – Laura (Erika)
  7. Reaching out to the whole Stanford Adult CF Population
        - update on progress with CF feedback questionnaire at clinic, August 1st?
  8. Bio staff/doctor questions – Ed (Erika, etc) REVIEW FILE:
  9. ACFAC Website:
    - Current changes, including new member bios, should be up soon
    - We discussed an appeal process for CF center patient decisions.
    What department/clinic did we want to include in the "helpful links" section of our ACFAC site? Stanford Patient Representation, Stanford Hospital Guest Services?
     - Please submit any website changes or additions to Jay. Changes will be made in 1 month batches after each month's meeting.
  10. FYI: New Cystic Fibrosis Caregivers Support Group
     Tuesdays, started July 5th 2011; 6:00 to 7:30pm
    See Flyer with information here:
Set date/time for next meeting – Wednesday, August 17th, 2011

To attend this meeting via WebEx: 

Topic: July CF MTG 
Date: Wednesday, July 20, 2011 
Time: 5:00 pm, Pacific Daylight Time (San Francisco, GMT-07:00) 
Meeting Number: 801 638 458 
Meeting Password: july 

To join the online meeting (Now from mobile devices!) 
1. Go to 
2. If requested, enter your name and email address. 
3. If a password is required, enter the meeting password: july 
4. Click "Join". 

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Call-in toll-free number (US/Canada): 1-877-669-3239 
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Access code:801 638 458 

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