Thursday, January 13, 2011

12-15-2010 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 Lori Kipp at (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 12/15/2010

Council members: Norma, Ed, Lori, Ann, Lindsey, Colleen, Eric
Via WebEx or teleconference: Kriss, Erika
Guests:  Zoe

Introductory Remarks
1. All council members introduced themselves for the benefit of those using remote attendance methods. 
2. Guests also introduced themselves.
3. Quick Cross Infection Control Reminder given by Colleen.
4. Minutes from previous meetings approved.
5. Stanford Liason Report- Joan thinks that exchanging agendas & minutes is a good idea, however, Norma has yet to receive anything.  All CFAC minutes & agendas should be emailed to Joan.

Old Business
6.  Bylaw changes approved.
7. Election of Officers – Kriss has agreed to chair the council but will need lots of council support.  Norma will co-chair.  Erika has agreed to be the secretary.  Colleen is the new Membership Chair and reminded us that we are all supposed to be actively recruiting new members.
8. Inpatient & clinic flyers – Kriss believes that the "We Want To Hear Your Voice" flyers have been implemented on C3, though Ed & Lindsey haven't seen any yet.  The flyer has been given to clinic, but as of the meeting date, had not been handed out as far as we know.  Lindsey is giving the flyer to older teens & parents at LPCH.
Draft 5 of the content of the "Help Us Help You" flyer is approved as final.  
9. Website update- The old CF Center website ( update is complete and can be linked to a (so far non-existent) council site.  Eric has scheduled a conference call with IT regarding the council website and both Colleen & Kriss will join in the conversation.  Lori will email our website "want" list to Eric & Kriss.  Also, Kriss will set up a CFAC blog where we can post minutes, agendas and more in the future.  Lori will email minutes to an email address that posts to and it will function as a website.
Doctor bios & info should be on our website or linked to our website.  Lori, Ed, Erika and Kriss will work on refining the list of questions to ask the doctors.  It was suggested that we keep it to 5 or 6 questions so as not to overwhelm them.  Erika will take the first pass at the questions, followed by Kriss, Lori and lastly Ed.  
10. CF Adult Support Groups – everyone with any relation to CF is welcome – family, friends & patients. 
Meetings will be held the first Friday of each month from 12 P.M. (noon) to 1 P.M. at the Li Ka Shing Center for Learning and Knowledge, Rm 304. 
So, upcoming CF Support Group Meetings are: January 7th, February 4th, March 4th, etc from noon to 1pm. 
11. The info from the general patient survey that we all receive in the mail is not CF specific and so won't be helpful to our clinic.  Zoe & Colleen reported that they sent out a survey to all the CF adults and received only 20 responses.  Eric suggested that we might be able to do a CF specific survey.
New Business
12. Topics for the CF education day were discussed and the general feeling is that if topics that interest adults are included, adults would be more likely to attend.  In the past, the majority of the info has applied to pediatric patients.  A couple of suggested topics are "How do you qualify for SSI or SSDI?" and "What qualifies you for the transplant list?"
13.  The next meeting will be Wednesday, January 19, 2011 from 5-7pm in the Blake Wilbur Conference Room. 

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