Thursday, July 11, 2013

7-17-2013 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, July 17, 2013, 5:00pm-7:00pm 
Location: Blake Wilbur Conference Room & Webex

Open Session

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

2.      Adopt June minutes (5:05 – 5:10)

3.      ACFAC / CF Center partnership projects (5:10 – 5:40)
Current project: “Supporting newly-diagnosed CFRD adults”

Presentation of projects for council input:
a.       Resource Card: review document at (Ed, Laura)

b.      Social Media/FB page:
·   URL, site, design (Brian E.)
·   Text: review document at (Richard)

4.      Quick Updates (5:40 – 5:55)

Peer2Peer program status (Elyse)
Council Projects page on website (Jay)
Temp Secretarial roles (Jackie)

Closed session

5.   ACFAC goals (6:00 – 6:40)

Council members: ideas and brainstorming for our next direction

6.   Readout of Action Items (6:40 – 6:45) (Richard)

7.   Next meeting: Wednesday, August 21, 5:00pm-7:00pm


Topic: CF Meeting-July 2013 
Date: Wednesday, July 17, 2013 
Time: 5:00 pm, Pacific Daylight Time (San Francisco, GMT-07:00) 
Meeting Number: 808 730 533 
Meeting Password: Wel2010come 
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: Wel2010come 
4. Click "Join". 
To view in other time zones or languages, please click the link:

To join the audio conference only 
To receive a call back, provide your phone number when you join the meeting, or call the 
number below and enter the access code. 
Call-in toll-free number (US/Canada): 1-877-668-4493 
Call-in toll number (US/Canada): 1-650-479-3208 
Global call-in numbers:

Toll-free dialing restrictions: 
Access code:808 730 533 
For assistance 
1. Go to 
2. On the left navigation bar, click "Support". 
You can contact me at: 
To add this meeting to your calendar program (for example Microsoft Outlook), click this 

The playback of UCF (Universal Communications Format) rich media files requires 
appropriate players. To view this type of rich media files in the meeting, please check 
whether you have the players installed on your computer by going to https://stanfordmed.we 

Wednesday, July 10, 2013

ACFAC 6-19-13 Meeting Minutes

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

Guests Present: Sarnjit, Eric

Members Absent: Lauren, Richard

  1. May 2013 minutes approved.
  2. Secretary role for taking of minutes divided up for August – November as Jackie will be out on "maternity leave."  Colleen will do August and November, Jay will do September, and October is to be assigned.  It was questioned whether or not the vice chairperson role accepts that task if the secretary is not present.
  3. It has been brought to Laura's attention that some people have been unclear with the direction of the council with regard to the projects over the past few months.  Members have suggested that when the council takes on a new goal or project to have a closed session, or further dialogue after members have had more time to think about the projects.  The council agreed to continue to discussion in the closed session.
  4. To recap the CFRD project, last month the council decided to proceed with the bookmark idea and the social media webpage.  The council decided to move away from the "buddy system" idea and the support group due to the large scope of the project and the HIPPA regulations that may make implementation of these difficult.
  5. For the bookmark, it was clarified that it is a physical handout, "pocket–sized" that will contain some basic yet useful information.  It was suggested to include some popular apps that others have found useful.  It was also suggested to add in contact information, such as the Endocrine department, diabetes educator and the dietician.  It was also recommended to make the size of the bookmark fit into the carrying case for the glucometer.
  6. For the social media Facebook page, Brian was looking for feedback as to what the council wants to have in the CFRD page, and Brian will meet with Meg to get that process started.  Brian reviewed the different types of websites available and which features the council feels are important in the Facebook page.  Some pages are more informational and others are more of a supportive set-up.  The next step will be to take the feedback provided by the council to Meg and the website / Facebook page developer.
  7. Colleen and Richard initiated discussion for the paragraph of introduction for the Facebook page, editing and modification ongoing.
  8. Closed session was held in which the council discussed the direction and goals of the council for moving forward.
  9. Next meeting set for July 17th from 5 – 7pm.

 Action Items

  1. Laura: Will get the apps and website addresses from Ed to add to the CFRD bookmark, as well as determine the contact info for who to put on the bookmark.
  2. All:  To think about goals for the council for the next meeting
  3. Richard / Colleen: To work on the text for the social media page
  4. Ed: To get the apps information to Laura of the CFRD bookmark