Thursday, September 26, 2013

9-18-13 meeting minutes

Members Present: Laura S.,Ann R.,Brian E.,Richard D.,Angel M., Amber R., Colleen. Minutes taken by Colleen in temporary absence of secretary.

Members Absent: Jackie R., Brian T., Elyse G., Ed K., Jay A.

Guests Present: None

Council Votes: August minutes approved, voted on and adopted.
                         The council voted to NOT hold the December 2013 meeting.

Tasks Assigned: None

Project Updates:
Facebook update from Brian E.: Our page should be functional within 2 weeks! Monitoring of the page was discussed: Meg feels she isn’t able to monitor the page every day. Our Stanford contact Liat Kobza would like our council help with monitoring of the page by checking in on the page daily. Brian T. has already agreed to log in each day. When he is unavailable both Brian and Amber are most generally on line and happy to do so. Additionally, Liat would like all members to login 1-2/week to keep the page “Active”.
CFRDM card update from Laura: The cards are nearly final. When ready, Laura will have them printed.  

Other: Upcoming meeting dates
 November 20, 2013.
(December - the December meeting has been cancelled)
 January 15, 2014.

Action Items : 1. Laura to contact Dr. Mohabir within 2 weeks to discuss the initiation of our clinic vision. Amber and Brian E. will continue thereafter as council’s liaisons to the clinic for ongoing work on the project.
 2. All officers should be prepared to share whether they plan to remain on the council for another term or to resign their position at the November meeting. Council voting on new positions will occur in January.
3. Brian. E will follow up with Liat regarding:
·         What expectations does Liat have of our group when “monitoring” the FaceBook page.
·         What is the course of action should we see something marginal/inappropriate.
·         Check if council can be granted “administrator rights” (Brian E and Amber R.
are both willing to become administrators)

Closed session was held; discussion of ACFAC document synthesizing large strategic goals/vision with specific tactical ideas and tasks.
Meeting called to a close at 6:05pm.

Next meeting: October 16, 2013

Tuesday, September 10, 2013

9-22-13 ACFAC Agenda

Anyone calling in needs to do so AHEAD of time. Call-in or WebEx members should get set up 10 minutes before the scheduled meeting time.  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.

Advisory Council visitors are welcome; however, attendees must respect the CF Center at Stanford cross infection guidelines. Please do not attend in person if you have an active viral infection or any other contagious condition. 

Only one individual with CF may be present in the Blake Wilbur meeting room; this guideline holds for all CF adults regardless of culture status, MRSA, b. cepacia, and so forth. Contact the chairperson Laura Steuer for further information.

Please have your own copy of the agenda and attachments with you during the meeting.

Stanford Adult Cystic Fibrosis Advisory Council (ACFAC) Agenda

Date/Time: Wednesday, Sept 18, 2013, 5:00pm-7:00pm 
Location: Blake Wilbur Conference Room & Webex

Open Session

1)      Introductions & meeting guidelines (5:00 – 5:05)

·         Temporary secretary (Colleen)

2)    Adopt August minutes (5:05 – 5:10)

3)    ACFAC / CF Center partnership projects (5:10 – 5:20)

·         Current project: “Supporting newly-diagnosed CFRD adults”
·         Facebook page: update from FB developer and launch date (Brian E.)

4)    Quick Updates (5:20 – 5:35)

·         November-January meeting calendar (Laura)

Closed session

5)    ACFAC vision project (5:35 – 6:20)

·         Review document at 

6)    Readout of Action Items (6:20 – 6:30) (Richard)

7)      Next meeting: Wednesday, October 16, 5:00pm-7:00pm

To attend this meeting via Webex:

Topic: CF Meeting -September 2013
Date: Wednesday, September 18, 2013
Time: 5:00 pm, Pacific Daylight Time (San Francisco, GMT-07:00)
Meeting Number: 804 897 694
Meeting Password: Wel2010come

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8-21-13 Meeting Minutes

ACFAC Meeting Minutes – August 21st, 2013               

Members Present: Ann, Jackie, Ed, Laura, Amber, Elyse, Angel, Brian E., Colleen, Brian T., Richard, Jay

Guests Present: Karen

Members Absent: N/A

  1. July 2013 minutes approved.
  2. Laura and Angel spoke with clinic staff regarding the CFRD resource card.  Endocrine dept. recommended adding several websites that patients have found useful.  Lara recommended to not include diabetes educators contact information as they may not have to capacity to handle an influx of calls. It was recommended to include the main endocrine dept. contact number.  In clinic, Kathy and/or Meg would be the most likely to hand out the card.
  3. Brian E. has been in contact with web developer for the private Facebook page.   It has been recommended by the developer to initially open it up to all patients, regardless of CFRD status, as that will increase the traffic.  Once page is established, CFRD can be a focus.  The development should take a couple of weeks once the process begins.  Meg will still act as gatekeeper / moderator for the page, and the page would only be able to be accessed once invited via a web link from the moderator.   Council members will take turns checking in to help initially create traffic, and Brian T. has volunteered to be a permanent "commentator" with the goal of keeping interest in the page.
  4. Temporary "minute-takers" established, Colleen to take minutes for September and November and Jay to take minutes for October.  They will only be responsible for typing up minutes and sending them to Laura, who has agreed to post to the ACFAC site as well as distribute the email.
  5. Closed session held to discuss future council vision and anecdotal research obtained.
  6. Next meeting set for Wednesday, September 18th from 5pm-7pm.

 Action Items

  1. Laura: To finalize CFRD resource card and present for final feedback
  2. Brian E.: To notify all council members when CFRD Facebook page goes live
  3. All: Review data and vision plan to prepare for email train