11-16-2011 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
Meeting Date/Time: Wednesday, November 16th, 2011 from 5:00 – 7:00 P.M.
Location: Blake Wilbur Conference Room


INTRODUCTORY REMARKS

• Introduction of Council Members (if guests are present) 
• Introduction of Guests (if guests are present)
• Approval of Minutes from Previous Meeting: 

COUNCIL BUSINESS

1. Council Chairperson - Fill position permanently now? Interim Chairperson? Skip December? - Kriss
2. Conversation about filling council officer positions, office responsibilities, and filling vacant spots before our January election. 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. - Laura
3. ACFAC Website: http://cfcenter.stanford.edu/acfac/
   - Update 2: "Get to Know the Stanford Adult CF Team" questionnaire CF Team response (deadline requested was October 10th).  
4. Discussion: Ask to add a new Adult tab on the CF center website?
   Review: http://cfcenter.stanford.edu
   Suggestions for what would be in this new Adult tab:
   a. note from last meeting: “How adult CF clinic works”
   b. note from last meeting: “Your Adult Doctor Choices”
   c. note from last meeting: “How To Call In Sick”
   d. note from last meeting: adult mentor program page or blurb
   e. discussion of each council member's brainstorming on this topic
5. Mentor Program discussion and suggestions - Lauren
   - form for potential mentors (review file: coming soon)
6. Council concerns and open discussion period
   Please note: Adult CF Support Group is on 12/2 with a new start time at 11:30am (new 1.5 hour meetings)
7. To close our meeting, Vice Chairperson (Laura) reviews her record of all items needing action and person(s) responsible for each action 
8. Set date/time for next meeting – **Discuss December 21st, Wednesday at 5pm

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Date: Wednesday, November 16, 2011 
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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

10-19-2011 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
Meeting Date/Time: Wednesday, October 19th, 2011 from 5:00 – 7:00 P.M.
Location: Blake Wilbur Conference Room


INTRODUCTORY REMARKS

• Introduction of Council Members (if guests are present) 
• Introduction of Guests (if guests are present)
• Approval of Minutes from Previous Meeting: http://cfacmeetings.blogspot.com/2011/10/9-21-2011-minutes.html

COUNCIL BUSINESS

1. 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). 
2. 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).
3. 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.
4. Eric M. will summarize "CFRI LIVE - Successful Transition: Ride With Us" (presented by Kathy Gesley). Transition is a topic that commonly comes up when our representative (currently Chairperson, Kriss) meets with the pediatric council. The CFRI presentation is recorded here: http://www.ustream.tv/recorded/17823167
5. From the Pediatric council meeting in September: Is there enough priority on adult content on CF center site? http://cfcenter.stanford.edu/
6. 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.
   Are these recordings searchable or discoverable?
   Should they be password protected? 
7. 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.
8. Vice Chairperson (Laura) reviews her record of all items needing action and person(s) responsible for each action to close our meeting 
9. Set date/time for next meeting – November 16th, Wednesday at 5pm

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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 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, 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: 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 jvillaruz@stanfordmed.org The recording of our meetings was discussed at length, voted and passed that the recording will no longer be attatched to the ACFAC minutes. 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. 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. 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. ACFAC Website: http://cfcenter.stanford.edu/acfac/ -  Reminder to all: any files sent between council members must include filename and date footnote. See template (download only): https://docs.google.com/leaf?id=0B7WrtjnOi5wMYjE4YzAwMDYtNjk3My00Y2JhLTk4YWUtY2ZkZjYyYThjZTVm&hl=en_US - 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). FYI: Cystic Fibrosis Caregivers Support Group is now fee free (donation requested) Tuesdays, starting July 5th 2011; 6:00 to 7:30pm The next council meeting has been scheduled for Wednesday October 19, 5-7pm. Closed Session: 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. 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.

9-21-11 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
Meeting Date/Time: Wednesday, September 21st, 2011 from 5:00 – 7:00 P.M.
Location: Blake Wilbur Conference Room


INTRODUCTORY REMARKS

• Introduction of Council Members (if guests are present) 
• Introduction of Guests (if guests are present)
• Approval of Minutes from Previous Meeting: http://cfacmeetings.blogspot.com/2011/08/july-2011-minutes.html

COUNCIL BUSINESS

1. Introduce Jocelyn Villaruz, new Chest Clinic manager
2. Advising the CF Clinic
   -  update: researching physician variability vs. individual doctoring, statistics for patient outcomes – Laura
   - at our quarterly feedback meeting Dr. Mohabir discussed positive statistics for the current Stanford CF adult model – Dr. Mohabir  
3. Council meeting WebEx recording discussion 
4. Proposed Stanford CF adult specific newsletter?
5. Quarterly feedback meeting summary:
   We scheduled our next ACFAC feedback meeting for: Friday, December 9th
   ** How do we want to gather feedback for this December feedback meeting? 
   Summary of meeting:
   1. There were no revisions suggested to the "Get to Know the Stanford Adult CF Team" questionnaire (https://docs.google.com/leaf?id=0B7WrtjnOi5wMOGUyOWRkMTMtNTFjZS00ZDZjLWJiZTUtYjE4NjNlYTQ5NWU0&hl=en_US). It is being distributed to the whole CF team (docs, coordinators, NPs, dietician, etc.) in September with a deadline of October 10th.
   2. Dr. Sista is no longer with the Stanford CF team. The 3 remaining CF doctors will spend more time at clinic (clinic coverage time will not decline). Also, Dr. Mohabir and Dr. Weill still have room to add more one-on-one CF patients. If patients are interested, contact Kathy.
   3. The CF center's clinic feedback form is estimated to "launch" November 1st. Dr. Mohabir plans to show the advisory council a draft with the questions before then.
   4. Jay and I passed on that we are hearing more and more patients and family express relief that the "growing pains" are subsiding, and generally feeling more positive about the Adult CF Center at Stanford.
6. ACFAC Website: http://cfcenter.stanford.edu/acfac/
   -  Reminder to all: any files sent between council members must include filename and date footnote. See template (download only): https://docs.google.com/leaf?id=0B7WrtjnOi5wMYjE4YzAwMDYtNjk3My00Y2JhLTk4YWUtY2ZkZjYyYThjZTVm&hl=en_US
   - 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)  
7. FYI: Cystic Fibrosis Caregivers Support Group is now fee free (donation requested)
   Tuesdays, starting July 5th 2011; 6:00 to 7:30pm
   See new Flyer with information here: https://docs.google.com/viewer?a=v&pid=explorer&chrome=true&srcid=0B7WrtjnOi5wMZDQxM2RjMzUtYzA4YS00ZTE3LThhMzUtODJiNzgwMDI5NTNh&hl=en_US
8. Vice Chairperson (Laura) reviews her record of all items needing action and person(s) responsible for each action to close our meeting 
9. Set date/time for next meeting – October 19th, Wednesday at 5pm

• ACFAC CLOSED SESSION: voting and non-voting Advisory Council members, Advisory Council medical and staff advisors only.
   - Vote on new Membership application.     - Vote on attendance enforcement

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July 2011 Minutes

7-20-2011 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 7/20/2011 Present: Council Members: Colleen Dunn, Ann Robinson, Erika Harrington, Kriss Benson, Jay Archibald, Dave Cartnal, Ed Kinney, Jackie Rotier, Lizeth Haber, Elyse Elconin-Goldberg. Guests: Arthur Yang, Anna Modlin, Nerissa Del Rosario, Charlene Kell. Absent: Caleigh Haber, Laura Caltron, Laura Steuer 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. (Elyse Elconin-Goldberg was at our meeting in June). Council Business: Distribution of Hospital form "Help us, Help you" Nerissa Del Rosarion (Interim Patient Care Manager for B3/C3) asked a few nurses of their opinion and they would like to add to the list of questions the needle size of any port you may have as well as the month and year it was placed if possible. The council will revise the questionnaire to add these questions. The yearly Election of ACFAC Officers is scheduled for September in our bylaws (page 3). Colleen, Erika, and Kriss were elected December 15th, 2010. Laura was elected May 18th, 2011. The council discussed and voted that we should change the yearly election of officers in January and will be shown in the bylaws. The bylaws were discussed to reflect the change in attendance. An additional item was mentioned to go with the 66% attendance requirement. That was to note exactly how many meetings that would be (8 meetings/year). The council voted and passed these additions. Jay will post the revised bylaws onto our website. Zoe Davies wrote and requested updates (one short paragraph maximum) from the adult and pediatric advisory boards for the CF newsletter: How about something like this for our ACFAC? In the Adult CF Advisory Council's (ACFAC) first years, they've successfully encouraged the new Adult CF Center to start an Adult CF Support Group and created forms to give patients tools to communicate their medical routine and wishes to the CF team. The ACFAC asks that adult CF patients and their families contact the council and make use of this unique resource and avenue for direct communication. How to Contact the Stanford Adult CF Advisory Council: Website: http://cfcenter.stanford.edu/acfac/ Email: stanfordcfac@gmail.com Phone: (650) 549-5102  This paragraph was discussed at length. The council agreed that we would like to see our logo with this paragraph. The council also wanted to make a few changes to the paragraph to make is a bit more open to guests. The council voted and decided that whatever Kriss came up with would be fine. 5. Our August 2011 ACFAC Current Member list (13 members total): Note: A quorum is defined as 50% + 1 voting members. We have 12 voting members. So, at each meeting, we need at least 7 voting members present. Kriss (Chairperson) Laura (Vice Chairperson) Colleen (Membership Chairperson) Erika (Secretary) Ann Ed Jay Elyse Jackie Lauren Caleigh David Lizeth (non-voting member) Advising the CF Clinic Due to Laura's absence Erika was asked to give an update on Laura's research addressing physician variability vs. individual doctoring. To sum it all up she is making lots of progress and is looking forward to some of the results. An update on the progress of the CF feedback questionnaire at the clinic is that it will be launched August 1st. The bio staff/doctor questions were talked about and some changes were made and voted upon. The council also agreed that there should be a brief introduction on the questionnaire as well. It was voted upon that Dave will come up with a short little blurb. Current changes, including new member bios, should be up on the ACFAC Website soon. Our quarterly meeting with Dr. Weill and Dr. Mohabir is coming up. Jay and Kriss will be attending this meeting. The council briefly discussed the option of having the month of August off. This was voted upon and approved. FYI: New Cystic Fibrosis Caregivers Support Group Tuesdays, started July 5, 2011; 6:00 to 7:30pm See Flyer with information here: https://docs.google.com/viewer?a=v&pid=explorer&chrome=true&srcid=0B7WrtjnOi5wMYjFmZWZhYjUtOTA5Ny00NGNkLWIwMzAtNjY4NDI1MDkxNzI5&hl=en_US&authkey=CJap8F4 13. Next meeting is scheduled for *September 21, 2011; 5-7pm.*

7-20-2011 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 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
Meeting Date/Time: Wednesday, July 20th, 2011 from 5:00 – 7:00 P.M.
Location: Blake Wilbur Conference Room

INTRODUCTORY REMARKS

• Introduction of Council Members (if guests are present) 
• Introduction of Guests (if guests are present)
• Approval of Minutes from Previous Meeting: http://cfacmeetings.blogspot.com/2011/07/6-15-2011-minutes.html

COUNCIL BUSINESS

1. Distribution of Hospital form "Help us, Help you" – Nerissa (Interim Patient Care Manager for B3/C3)
     - revised and emailed to Eric (6/20) and will be updated on our website soon: https://docs.google.com/viewer?a=v&pid=explorer&chrome=true&srcid=0B7WrtjnOi5wMNTMwMjQyNTYtZjYxMy00MTQ4LTgwZTgtZTM0YTYzOWNkN2U5&hl=en_US  
2. The yearly Election of ACFAC Officers is scheduled for September in our bylaws (page 3).
   - Colleen, Erika, and Kriss were elected December 15th, 2010. Laura was elected May 18th, 2011.
   - Discuss how we want to handle election timing from here?
   - VOTE: do we change the bylaws?
3. Revised bylaws with attendance change and more. REVIEW FILE: https://docs.google.com/viewer?a=v&pid=explorer&chrome=true&srcid=0B7WrtjnOi5wMMmJiMjlkYmQtMTg1MS00Yjc0LTlhZTgtMzBhNmNlZWQyYjg1&hl=en_US
   VOTE: to approve the new bylaws and post on ACFAC website?
4. Zoe Davies wrote and requested updates (one short paragraph maximum) from the adult and pediatric advisory boards for the CF newsletter:
   How about something like this for our ACFAC?
   

   In the Adult CF Advisory Council's (ACFAC) first years, they've successfully encouraged the new Adult CF Center to start an Adult CF Support Group and created forms to give patients tools to communicate their medical routine and wishes to the CF team. The ACFAC asks that adult CF patients and their families contact the council and make use of this unique resource and avenue for direct communication.
   How to Contact the Stanford Adult CF Advisory Council:
   Website: http://cfcenter.stanford.edu/acfac/
   Email: stanfordcfac@gmail.com
   Phone: (650) 549-5102 

   VOTE: approve this blurb for the CF newsletter?  
5. Our August 2011 ACFAC Current Member list (13 members total):
   Note: A quorum is defined as 50% + 1 voting members. We have 12 voting members. So, at each meeting, we need at least 7 voting members present.
   Kriss (Chairperson)
   Laura (Vice Chairperson)
   Colleen (Membership Chairperson)
   Erika (Secretary)
   Ann
   Ed
   Jay
   Elyse
   Jackie
   Lauren
   Caleigh
   David
   Lizeth (non-voting member)
6. Advising the CF Clinic
      -  update: research physician variability vs. individual doctoring, statistics for patient outcomes – Laura (Erika)
7. Reaching out to the whole Stanford Adult CF Population
       - update on progress with CF feedback questionnaire at clinic, August 1st?
8. Bio staff/doctor questions – Ed (Erika, etc) REVIEW FILE: https://docs.google.com/viewer?a=v&pid=explorer&chrome=true&srcid=0B7WrtjnOi5wMOTY2MWNiNzEtN2JkNi00YjMxLWEwOTktNGRlZDQ1ZDE5OTQ0&hl=en_US
9. ACFAC Website:
   - Current changes, including new member bios, should be up soon
   - We discussed an appeal process for CF center patient decisions.
   What department/clinic did we want to include in the "helpful links" section of our ACFAC site? Stanford Patient Representation, Stanford Hospital Guest Services?
    - Please submit any website changes or additions to Jay. Changes will be made in 1 month batches after each month's meeting.
10. FYI: New Cystic Fibrosis Caregivers Support Group
     Tuesdays, started July 5th 2011; 6:00 to 7:30pm
    See Flyer with information here: https://docs.google.com/viewer?a=v&pid=explorer&chrome=true&srcid=0B7WrtjnOi5wMYjFmZWZhYjUtOTA5Ny00NGNkLWIwMzAtNjY4NDI1MDkxNzI5&hl=en_US&authkey=CJap8F4

Set date/time for next meeting – Wednesday, August 17th, 2011

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To attend this meeting via WebEx: 

Topic: July CF MTG 
Date: Wednesday, July 20, 2011 
Time: 5:00 pm, Pacific Daylight Time (San Francisco, GMT-07:00) 
Meeting Number: 801 638 458 
Meeting Password: july 

To join the online meeting (Now from mobile devices!) 
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1. Go to https://stanfordmed.webex.com/stanfordmed/j.php?ED=155183202&UID=1192899357&PW=NMzEyNmI4MjNl&RT=MiM0 
2. If requested, enter your name and email address. 
3. If a password is required, enter the meeting password: july 
4. Click "Join". 

To view in other time zones or languages, please click the link: 
https://stanfordmed.webex.com/stanfordmed/j.php?ED=155183202&UID=1192899357&PW=NMzEyNmI4MjNl&ORT=MiM0 
 
To join the audio conference only 
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To receive a call back, provide your phone number when you join the meeting, or call the number below and enter the access code. 
Call-in toll-free number (US/Canada): 1-877-669-3239 
Call-in toll number (US/Canada): +1-408-600-3600 
Global call-in numbers: https://stanfordmed.webex.com/stanfordmed/globalcallin.php?serviceType=MC&ED=155183202&tollFree=1 
Toll-free dialing restrictions: http://www.webex.com/pdf/tollfree_restrictions.pdf 

Access code:801 638 458