Sunday, December 16, 2012

12-19-12 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 in person 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

Date/Time: Wednesday, December 19, 2012, 5:00pm-7:00pm 
Location: Blake Wilbur Conference Room


1.      Introductions (5:00 – 5:15)

2.      Adopt November minutes (5:15 – 5:20)

3.      Patient/Family Centered Care: ACFAC / CF Center partnership project (5:20 – 6:20)

4.      Annual document review, part 1 (6:20 – 6:30)

5.      Quick updates and check-ins (6:30 – 6:40)

  • Website update, Bios and Council Projects: Jay
  • Peer2Peer program: Lauren

6.   Action items (6:40 – 6:45

7.   Date/time for next meeting: Wednesday, January 16, 5:00pm-7:00pm


To attend this meeting via WebEx:

Topic: CF Mtg - Dec
Date: Wednesday, December 19, 2012
Time: 5:00 pm, Pacific Standard Time (San Francisco, GMT-08:00)
Meeting Number: 800 154 807
Meeting Password: december

To join the online meeting (Now from mobile devices!)
1. Go to VlMDI5Njli&RT=MiM0
2. If requested, enter your name and email address.
3. If a password is required, enter the meeting password: december
4. Click "Join".

To view in other time zones or languages, please click the link: VlMDI5Njli&ORT=MiM0

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): +1-408-600-3600
Global call-in numbers: &tollFree=1
Toll-free dialing restrictions:

Access code:800 154 807

For assistance
1. Go to
2. On the left navigation bar, click "Support".

Thursday, December 6, 2012

11-21-12 ACFAC Meeting Minutes

ACFAC Meeting Minutes – November 21st, 2012         


Members Present: Lauren, Elyse, Ed, Jay, Ann, Bryan, Jackie


Members Absent: Laura, Colleen, Richard


Guests Present:  Rosie


  1. October minutes approved.
  2. The council discussed research completed thus far for the members individual areas.  Those members that were researching transportation (Laura, Bryan) included Lions/Kiwanis clubs, Angel Flight, Ride-Share programs, public transportation and the National Patient Transportation Center.  Some of the members split the category up into those needing "medical" assistance for transportation, and those who need a means of transportation.
  3. Ann and Elyse, who were researching fundraising opportunities, presented a letter writing campaign.  Discussed were the letter itself and the logistics necessary to create a fund, who to send donations to, methods to send donations, etc.  This information is to be clarified with Eric and Colleen.  The goal is to raise $5,000 and the fund is to support transportation for clinic appointments including necessary additions such as lodging that may be required for long-distance travel. 
  4. Jackie researched work-related difficulties.  Most of the resources available are for those who need to take extended absences, over a week or more, but there is a section of the FMLA law that allows for intermittent absences for the management of chronic medical conditions.  Given the guidelines, it appears as though CF would qualify.  While FMLA does not provide financial compensation, it does provide job protection.  There is also a resource book found on the website geared towards clinicians to help patients with legal rights issues.
  5. The training session for Peer2Peer Program was launched.  There were 3 mentors from the CF group and 5 mentors from the Heart Transplant group.  Some people did attend via WebEx.
  6. Next Meeting set for Wednesday, December 19th from 5pm to 7pm.


Action Items


  1. All: If you have not already, please email you're the information you have found in your research regarding your specific area to Laura, as she will compile the information into one document.