Monday, June 10, 2013

6-19-13 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) 

Date/Time: Wednesday, June 19, 2013, 5:00pm-7:00pm 
Location: Blake Wilbur Conference Room & Webex

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

2.      Officers (5:05 – 5:15) 
·         Assignment of temporary Secretarial role

3.     Adopt May minutes (5:15 – 5:20)

4.      ACFAC / CF Center partnership projects (5:20 – 5:55)
 Current project: “Supporting newly-diagnosed CFRD adults”

a.        Review of council decisions March - May 
b.        Presentation of project drafts for council input:
·         Bookmark: see document at ­­­­­ Council to give feedback (Ed, Laura)
·         Progress on Social Media/FB page (Brian E.)
·         Text, titles for page (Richard, Colleen)

5.      Council members session (6:00 – 6:30)

·         History and context of clinic/council partnership projects
·         Looking ahead: council priorities, our goals

6.     Quick Updates (6:30 – 6:40)

·         Peer2Peer liaison, status of program (Elyse, Lauren)

7.      Action Items (6:40 – 6:45)

8.      Next meeting: Wednesday, July 19, 5:00pm-7:00pm


To attend this meeting via WebEx:

Topic: CF June Meeting 
Date: Wednesday, June 19, 2013 
Time: 5:00 pm, Pacific Daylight Time (San Francisco, GMT-07:00) 
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Access code:809 129 526 

Friday, June 7, 2013

ACFAC 5-15-2013 Meeting Minutes

ACFAC Meeting Minutes – May 15th, 2013                   

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

Guests Present: Kathy, Eric, Sarnjit, Meg

Members Absent: Lauren, Brian T.

  1. April 2013 minutes approved.
  2. Jackie is expecting (due in October) and requested a council member or members to help with temporarily filling in at Secretary role to take minutes, possibly starting August but definitely starting September.  Colleen volunteered to take minutes for August meeting. 
  3. Discussion regarding the council's new project in partnering with the clinic, supporting newly diagnosed CFRD (Cystic Fibrosis Related Diabetes) patients.  Members who had areas to research presented his/her findings on that specific area.
    • Kathy provided some background and discussed what is currently provided to newly diagnosed CFRD patients.  This includes: a booklet designed by the CF Foundation regarding CFRD, approximately 45 pages long; a glucometer and handbook; and the possibly of using mobile applications (apps) to help with management of CFRD.
    • Ed and Kathy researched the area of apps for mobile use.  Kathy had several that have already been "vetted."  The next goal is to organize the apps into categories and possibly create a bookmark type handout that can be provided to patients.  Ed requests that any member who is using an app, to let him know to add it to the list.
    • The next area discussed was the possibility of a separate CFRD support group.  Elyse investigated this possibility with Meg and the consensus was that a separate group would not be feasible.  Instead, Meg's goal is to have at least one adult support group meeting per year devoted to CFRD.  Meg also mentioned that the CFRD tends to come up during support group meetings, regardless of the topic.  It was also noted that this avenue does not really address the newly diagnosed, and while ongoing support for CFRD is needed, the current goal is outreach to those who have been newly diagnosed.
    • Laura investigated the possibility of a mentor or buddy system.  Given the training required and liability involved, it was also agreed that this may not be the best avenue to start out. 
    • The last area discussed was the use of social media.  Brian researched different types of social media and had a presentation that will be emailed to council members after the meeting.  He looked at the different types of resources and highlighted the different tasks of the websites.  Some sites are more informational in nature, and others are designed for more interaction.  The goal of his presentation was to help the council identify what the council wanted from the social media for this project.
    • Meg identified that many CF patients she works with find social media, specifically Facebook, as an integral resource for discussing topics and even "venting."  It is seen as a method of support that is essentially available at all times.  Meg has talked with Stanford's Facebook liaison regarding having a private Facebook group for CFRD support.  The group would be private, via invitation only, and per the liaison, would be separate from a person's own page. For example, information posted by a person to the private group page would not appear on his or her own timeline.  It was discussed that should the council decide to proceed, that the council members should all participate to help get the page going.
  4. Ann provided an update regarding the fundraising efforts for the transportation project.  To date, there have been 25 donors with a total of $5,265.   All donors have been given Thank You letters.
  5. Colleen provided an update on membership.  Lauren has decided to leave the council.  Laura to talk with Lauren to get a final date and also to get any needed information for the Peer2Peer program.  Elyse also volunteered to be the new point person for the program. 
  6. A closed session was held to vote on a new member.
  7. Next meeting set for June 19th from 5 – 7pm.

Action Items

  1. All: Let Ed know if you are using any apps related to CFRD
  2. Laura: To work with Ed to develop a bookmark style handout for the completed list of apps
  3. All: Review Brian E.'s presentation regarding the difference in websites
  4. Richard and Colleen: To brainstorm a catchy title and description for the private CFRD Facebook group/page