October 2011 Minutes

10-19-2011 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 mrs.harrington@sbcglobal.net (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 Present: Council Members: Colleen Dunn, Laura Steuer, Ann Robinson, Kriss Benson, Erika Harrington, Lauren Caltron, Jay Archibald, Eric Marten, Ed Kinney. Guests: Zoe Davies, Dr. Paul Mohabir, Siri Vaeth (member of the CF Parent Advisory Council) Absent: Lizeth Haber, Dave Cartnal, Jackie Rotier, Elyse Elconin-Goldberg 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.Date/time for next meeting – November 16th, Wednesday at 5pm Council Business: From the Pediatric council meeting in September: Is there enough priority on adult content on CF center site? http://cfcenter.stanford.edu/ . The council talked about this and decided to brainstorm some ideas and bring them to our next meeting. WebEx meeting video and voice recording links removed from online meeting blog. Our council secretary will always have a file with links to our recordings. Erika will pass on this info to the next ACFAC secretary. Reminder that a conversation about filling council officer positions, office responsibilities, and filling vacant spots before our January election is planned for our November council meeting. Officers please think about if you want to ask to remain in your position. Members please give real thought to if you want to consider an officer position and any questions you might have about each position. ACFAC Website:http://cfcenter.stanford.edu/acfac/ -Update:"Get to Know the Stanford Adult CF Team" questionnaire CF Team response (deadline requested was October 10th). - Parking note and Council template is on our resource page now. Our resource page link:http://cfacmeetings.blogspot.com/p/stanford-acfac-resource-page.html -Please submit any website changes or additions to Jay. Changes will be made in 1 month batches after each month's meeting. Discussion: Each council member brainstormed 2 questions to add to Adult CF in-clinic survey for any new versions that may be created in the future (if the first version form is a success). I will attach a link to view all of the questions that the council came up with. Later on we will narrow down the list. Discussion: Each member to brainstorm ideas to encourage adults to show up to adult CF clinic at least quarterly. Also, brainstorm how to inform or raise awareness of the choice adult CF patients have to be followed by one doctor (reminder, these requests are made through Kathy). I will attach a link to some of the ideas the council came up with. Eric M. briefly summarized "CFRI LIVE - Successful Transition: Ride With Us" (presented by Kathy Gesley). The CFRI presentation is here: http://www.ustream.tv/recorded/17823167 Date/time for next meeting – November 16th, Wednesday at 5pm