Saturday, October 8, 2011

9-21-2011 Minutes

9-21-2011 Minutes

  • Advisory Council visitors are welcome; however, attendees must respect the CF Center at Stanford cross infection guidelines. Please do not attend 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. If you would like to attend via teleconferencing, please contact Erika Harrington (the current Advisory Council secretary). She will let you know how you can participate.  (Web conferencing/Skype not yet available.)

CF Advisory Council Meeting Minutes 9/21/2011


Council Members: Colleen Dunn, Laura Steuer, Ann Robinson, Kriss Benson, Erika Harrington, Lauren Caltron, Jay Archibald, Elyse Elconin-Goldberg, Jackie Rotier, Ed Kinney.

Guests: Zoe Davies, Arthur Yang, Renetta Robinson, Jocelyn Villaruz, Dr. Paul Mohabir

Absent: Caleigh Haber, Lizeth Haber, Dave Cartnal

Introductory Remarks:

  • All council members introduced themselves for the benefit of those using remote attendance methods.

  • Guests introduced themselves.

  • Minutes from the previous meeting were approved.

Council Business:

  1. Jocelyn Villaruz, the new Chest Clinic Manager was introduced. Her contact info follows:

300 Pasteur Dr., Room A100

Stanford, CA 94305

t: (650) 725-6412

c: (650) 888-3161

    1. The recording of our meetings was discussed at length, voted and passed that the recording will no longer be attatched to the ACFAC minutes.

    2. A Stanford CF adult newsletter was proposed. The council talked about this, Laura Steuer has volunteered to write a column for the next newsletter when the time comes. The council likes the idea of having a column and reaching out to the CF community.

    3. Our quarterly meeting with Dr. Weill and Dr. Mohabir was discussed at length and ultimately decided that these meetings should be as needed rather than quarterly, less informal.

    4. Laura Steuer presented her findings on physician variability vs. individual doctoring. I will attach her findings. In the long run, her results concluded that it didn't really matter between physician variability vs. individual doctoring. However, it did bring up new questions.

    5. ACFAC Website:
      Reminder to all: any files sent between council members must include filename and date footnote. See template (download only):
      - Please submit any website changes or additions to Jay. Changes will be made in 1 month batches after each month's meeting.
      - Kriss owes changes to: Help Us, Help You (port needle size plus month/year placed)
      - Laura: bylaw file (66% noted as attending at least 8 of the 12 meetings per year and election timing changed to January of each year).

    6. FYI: Cystic Fibrosis Caregivers Support Group is now fee free (donation requested)
      Tuesdays, starting July 5th 2011; 6:00 to 7:30pm

    7. The next council meeting has been scheduled for Wednesday October 19, 5-7pm.

      Closed Session:

  1. The council voted upon if we should enforce the attendance requirement wether or not it was an excused absence or not. After much discussion the council voted to enforce this.

  2. The council also talked about a new membership application that was received. The council discussed this breifly, voted and has decided to bring on a new member.

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