6-15-2011 Minutes

6-15-2011 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 6/15/2011 Present: Council Members: Lindsey Martins, Colleen Dunn, Ann Robinson, Erika Harrington, Kriss Benson, Jay Archibald, Dave Cartnal, Ed Kinney, Jackie Rotier, Laura Steuer, Lizeth Haber. Guests: Danny Altano, Renetta Roberson, Dr. Paul Mohabir, Eric Williams. Absent: Caleigh Haber, Laura Caltron This months' meeting was NOT recorded unfortunately. 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: The council attendance was discussed at length. It was voted upon and passed that each member is responsible for noting any errors in their attendance on each of the meeting minutes. It was also voted upon by council that there will now be 5 missed meetings allowed. Kriss and Laura will revise the bylaws to reflect this decision. Renetta is pleased to introduce the New Advanced Lung Disease Clinic starting June 20, 2011 located on the first floor in Room A175. Kriss and Jay will be adding the Stanford Patient Relations page to our website to help assist any patients to help with an appeal process. Colleen and Dr. Mohabir said that the CF feedback questionnaire was approved by the CF Adult Team. It will be distributed starting July 1st or August 1st and will run for a 3 month trial. Member anniversary dates were given to Erika. The new council member "folder" is now combined with the Council resource page and has been approved by the council. Massage services will be added to the website for inpatients. Kriss will send the revised file to Eric. The bio staff/doctor questions will be revised and the number of questions will be shortened to returned to the meeting in July. The ACFAC website is up and new member bios will be added shortly. As a reminder, please submit all changes to Jay for June edits. It was announced that Rudy will no longer be the nurse manager for inpatients. Eric will get together with Rudy and Nerissa (the new nurse manager) to discuss the distribution of the "Help Us, Help You" form. FYI: New Cystic Fibrosis Caregivers Support Group Tuesdays, starting July 5, 2011; 6-7:30pm See Flier with information here: https://docs.google.com/viewer?a=v&pid=explorer&chrome=true&srcid=0B7WrtjnOi5wMYjFmZWZhYjUtOTA5Ny00NGNkLWIwMzAtNjY4NDI1MDkxNzI5&hl=en_US&authkey=CJap8F4 Next meeting is scheduled for Wednesday, July 20, 2011, 5-7pm.