Saturday, August 17, 2013

8-21-13 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 July minutes (5:05 – 5:10)

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

·                CFRD resource card: feedback from endocrine team and CF nutritionist (Angel, Laura)

·                Social Media/FB page: update from FB developer; process for page invitation/access (Brian E.)

4.      Quick Updates (5:40 – 5:55)

·         Temp secretary assignments (Jackie)

Closed session

5.      ACFAC goals (6:00 – 6:40)

·         Anecdotal research from patients and clinics; read (Amber and Angel)
·         Potential council vision/plan; read (Brian E. and Laura)

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

7.      Next meeting: Wednesday, September 18, 5:00pm-7:00pm


To attend this meeting via Webex:

Topic: CF Meeting- August 2013 
Date: Wednesday, August 21, 2013 
Time: 5:00 pm, Pacific Daylight Time (San Francisco, GMT-07:00) 
Meeting Number: 809 236 000 
Meeting Password: Wel2010come 

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Wednesday, August 14, 2013

ACFAC 7-17-13 Meeting Minutes

Members Present: Angel, Brian E., Elyse, Laura, Jay, Ann, Jackie, Richard, Amber, Ed
Guests Present: Sarnjit, Karrie
Members Absent: Brian T., Colleen
  1. June 2013 minutes approved.
  2. Discussion held regarding the pocket-sized information card for the CFRD project.  Recommendations included to allow space for notes and to make it business card size and possibly double sided. 
  3. Brian E. spoke with Meg regarding the CFRD private Facebook page, and the recommendations from the council from the May meeting.  Brian's goal is to speak directly with the web developer who is the person in charge of designing and implementing the page.  
  4. Richard is working on paragraph for CFRD private Facebook page, may need to be reworded depending on the purpose of the paragraph and who it can be view by (i.e. people who are already members of the page, or anyone looking to join the page)
  5. Elyse provided an update of the Peer2Peer program with no major changes to report.  Plans are in the works for another training session and additional mentors are needed, timeline and specifics to follow.
  6. Jackie is still looking for a volunteer minutes-taker for October.
  7. Closed session held to discuss future council goals/direction.
  8. Next meeting set for Wednesday, August 21st from 5pm-7pm.
 Action Items
  1. Laura: To adjust/change the CFRD information card / bookmark
  2. Brian E.: To get in contact with website developer for private CFRD Facebook page, and to address logistics of how patients will be invited to the page
  3. All: To get in contact with other CF patients to get information about how other CF clinics are organized. Report findings to Angel and Amber who will synthesize for next meeting.
  4. Angel and Laura: To ask endocrine clinic feedback on CFRD resource card.