Sunday, January 13, 2013

1-16-13 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, January 16, 2013, 5:00pm-7:00pm 
Location: Blake Wilbur Conference Room


1.      Introductions (5:00 – 5:15)

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

3.      Patient-Family Centered Care ACFAC / CF Center partnership project (5:20 – 6:20)
Current goal: supporting CF center goal “helping patients gets to clinic”

4.      Annual document review, part 11 (6:20 – 6:30)

5.      Quick updates and check-ins (6:30 – 6:45)

  • Peer2Peer program (Lauren)
  • Stanford CF Education Day 3/213 (Colleen)
  • Vote results: website bios; ACFAC buttons (Laura)

6.   Action items (6:45 – 6:50

5.   Date/time for next meeting: Wednesday, February 20, 5:00pm-7:00pm


To attend this meeting via WebEx:

Topic: CF Advisory Meeting - January
Wednesday, January 16, 2013
5:00 pm, Pacific Standard Time (San Francisco, GMT-08:00)
Meeting Number: 804 571 559
Meeting Password: 2323

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Friday, January 11, 2013

ACFAC 12-19-12 Meeting Minutes

ACFAC December 19th Meeting Minutes

Members present: Laura, Lauren, Elyse, Ed, Jay, Ann, Brian T., Richard, Colleen

Members absent: Jackie, Brian E.

Guests present: Rosie, Eric

  1. November minutes approved.
  2. Introduction of our newest member, Brian T.
  3. Fundraising campaign: "Have a heart, help us out" update by Ann and Elyse. They presented their timeline: Letter to be mailed by Feb 7th, 2013. Discussed were issues concerning what mailing list will be used, if a suggested amount should be included on the letter and how the council feels about "asking for money." Ultimately it was concluded that mailing out the letter will be optional for each member. It was restated why fundraising for this particular issue is important to the council and its goals: that the clinic expressed that it would be helpful to have an additional 5,000 dollars to aid the travel expenses (gas cards, hotel vouchers, taxis) of target patients. Another issue brought up was whether this fundraising endeavor will be annual. As of now, it was decided that the fundraising effort is a trial run, with the possibility of it being an annual event.  If it is successful (in raising the money AND improving attendance), the council will decide next year to do it again.
  4. The council approved the "Have a heart, help us out" letter, budget, and timeline.  The color option was chosen and $469.00 was budgeted towards it.
  5. Laura presented the ongoing research by Richard, Brian E., and herself into transportation to clinic.  She is going to talk to Meg about what format would be best to present the information collected. Then she will bring it back to the council for approval.
  6. We had a quiz on the official council webpage. We... did alright.
  7. Discussion was held regarding adding photos the council member bios on our webpage. The council will have an electronic vote and talk about it next meeting.
  8. Elyse, Lauren and Jay discussed the Peer2Peer program. All have been matched with mentees. Also, there is an extended training session on the 14th.

Action items:

  1. All: Decide if you would like to participate in the fundraiser and contact colleen to "order" letters.
  2. Laura: Talk to Meg about the best format to present the transportation information.
  3. All: Decide on photos
  4. Lauren/Laura: Newsletter blurb on the Peer2Peer Program