ACFAC Site: Meeting Blog

Wednesday, April 10, 2013

4-17-2013 Agenda

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. 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.

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. Only one individual with CF may be present in the actual meeting room; please contact the chairperson Laura Steuer for further information.

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 attend via Webex.

Please have your own copy of the agenda and attachments with you during the meeting.

The Stanford Adult Cystic Fibrosis Advisory Council Agenda

Date/Time: Wednesday, April 17, 2013, 5:00pm-7:00pm

Location: Blake Wilbur Conference Room

1. Introductions & meeting guidelines (5:00 – 5:05)

2. Adopt March minutes (5:05 – 5:10)

· Review minutes at http://cfacmeetings.blogspot.com/2013/04/acfac-3-20-13-meeting-minutes.html

3. Patient-Family Centered Care: ACFAC / CF Center partnership projects (5:10 – 6:20)

a. Follow-up from March project (5:10 – 5:20)

· Contact Isolation guidelines for C3 and B3 hospital units, see https://docs.google.com/file/d/0B7WrtjnOi5wMSEVsOC1xZUtkSkU/edit?usp=sharing

b. New project: “Newly-diagnosed CFRD” (5:20 – 6:10)

· Barriers to CFRD management; knowledge base; checking sugars; food issues

· Short-term support; buddy system; online/chat support; printed material; pool of similar patients; other

c. Tasks and assignments (6:10 – 6:20)

4. Quick updates and check-ins (6:20 – 6:30)

· Fundraising totals (Ann, Elyse)

· Peer2Peer program (Lauren)

· Stanford website review & CF use cases (Brian E.)

5. Action items (6:30 – 6:40)

6. Date/time for next meeting: Wednesday, May 15, 5:00pm-7:00pm

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To attend this meeting via WebEx:

Topic: CF Advisory Meeting-April

Date: Wednesday, April 17, 2013

Time: 5:00 pm, Pacific Daylight Time (San Francisco, GMT-07:00)

Meeting Number: 285 942 151

Meeting Password: Wel2010come

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To join the online meeting (Now from mobile devices!)

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1. Go to https://stanfordmed.webex.com/stanfordmed/j.php?ED=18274513&UID=49405583&PW=NMTFk

YzY3ZDVi&RT=MiM0

2. If requested, enter your name and email address.

3. If a password is required, enter the meeting password: Wel2010come

4. Click "Join".

To view in other time zones or languages, please click the link:

https://stanfordmed.webex.com/stanfordmed/j.php?ED=18274513&UID=49405583&PW=NMTFkYzY3ZDVi&

ORT=MiM0

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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): 1-877-668-4493

Call-in toll number (US/Canada): 1-650-479-3208

Global call-in numbers: https://stanfordmed.webex.com/stanfordmed/globalcallin.php?service

Type=MC&ED=18274513&tollFree=1

Toll-free dialing restrictions: http://www.webex.com/pdf/tollfree_restrictions.pdf

Access code:285 942 151

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For assistance

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1. Go to https://stanfordmed.webex.com/stanfordmed/mc

2. On the left navigation bar, click "Support".

Saturday, March 16, 2013

3-20-2013 Agenda

Please have your own copy of the agenda and attachments with you during the meeting.

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. Only one individual with CF may be present in the actual meeting room; please contact the chairperson Laura Steuer for further information.

The Stanford Adult Cystic Fibrosis Advisory Council Agenda

Date/Time: Wednesday, March 20, 2013, 5:00pm-7:00pm

Location: Blake Wilbur Conference Room

1. Introductions (5:00 – 5:05)

2. Adopt February minutes (5:05 – 5:10)

· Review minutes at http://cfacmeetings.blogspot.com/2013/03/acfac-2-20-13-meeting-minutes.html

3. Stanford CF Education Day (5:10 – 5:20)

· Feedback, thoughts, sharing

4. CFF Infection Protocol press release (5:20 – 5:35)

· Medical and social ramifications

5. Patient-Family Centered Care: ACFAC / CF Center partnership project (5:35 – 6:20)

· Presentation by staff: What are the current clinic goals/projects? (5:35 – 5:50)

· Discussion by council: Which goal/project shall we undertake? Assignment of tasks? (5:50 – 6:20)

6. Quick updates and check-ins (6:20 – 6:35)

· Fundraising update: Some great news! (Ann, Elyse)

· Clinic operations

· CF newsletter (Laura)

7. Action items (6:35 – 6:40)

8. Date/time for next meeting: Wednesday, April 17, 5:00pm-7:00pm

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To attend this meeting via WebEx:

Topic: CF Advisory Council - March

Date: Wednesday, March 20, 2013

Time: 4:45 pm, Pacific Daylight Time (San Francisco, GMT-07:00)

Meeting Number: 800 309 719

Meeting Password: march

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To start or join the online meeting

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Go to https://stanfordmed.webex.com/stanfordmed/j.php?ED=199305907&UID=493120277&PW=NNjNiZ

GVjYzkz&RT=MiM0

-------------------------------------------------------

Audio conference information

-------------------------------------------------------

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): 1-877-668-4493

Call-in toll number (US/Canada): 1-650-479-3208

Global call-in numbers: https://stanfordmed.webex.com/stanfordmed/globalcallin.php?service

Type=MC&ED=199305907&tollFree=1

Toll-free dialing restrictions: http://www.webex.com/pdf/tollfree_restrictions.pdf

Access code:800 309 719

-------------------------------------------------------

For assistance

-------------------------------------------------------

1. Go to https://stanfordmed.webex.com/stanfordmed/mc

2. On the left navigation bar, click "Support".

To add this meeting to your calendar program (for example Microsoft Outlook), click this

link:

https://stanfordmed.webex.com/stanfordmed/j.php?ED=199305907&UID=493120277&ICS=MS&LD=1&RD=

2&ST=1&SHA2=AAAAAuYm2gIYvCgMsaA91wx-yC16EGzIRGeVmkT2e-OSo-0t

To check whether you have the appropriate players installed for UCF (Universal

Communications Format) rich media files, go to https://stanfordmed.webex.com/stanfordmed/s

ystemdiagnosis.php.

http://www.webex.com

Sunday, March 10, 2013

ACFAC 2-20-13 Meeting Minutes

ACFAC Meeting Minutes – February 20^th, 2013

Members Present: Laura, Brian E., Brian T., Ed, Colleen, Ann, Richard, Jay, Jackie

Members Absent: Elyse, Lauren

Guests Present: Eric, Zoe, Kathy

January 2013 minutes approved.
Kathy discussed the upcoming Quality Improvement Initiatives that members of the CF team are working on. The two upcoming areas are to improve the understanding in clinic and while inpatient of contact isolation and what it means; and to look further into the sleep/wake cycle and how it is affected by an inpatient stay. Discussion was held regarding the first topic and Kathy is seeking continued feedback about whether staff members are adhering to the infection control protocols while in clinic and while inpatient. The discussion held indicated that not all CF patients, family members, and caregivers understand the infection control protocol and continued education would help make this area more clear. For the second topic, the goal is to investigate how modifications to the daily routine of an inpatient stay affect the sleep/wake cycle, as well as the importance of fitting all daily treatments in while inpatient. Kathy is seeking continued feedback on these areas, so feel free to email her with any other comments that you may have on the topics.
Update on Stanford CF Education Day provided by Colleen. Currently there are 44 people signed up. The CFRI will be live streaming the presentations, and slides of the presentations will be available on the Stanford CF Center website. Discussion was held regarding whether or not there was a way for people viewing live via the internet to participate and ask questions. While a "web-ex" type situation is not currently available, it was decided that Colleen would contact CFRI to see if an email/text option can be set-up. Colleen plans to discuss further possibilities for next year's Ed Day with the CFRI group, to see what, if any, options are available to increase the ability of those viewing via the internet to interact with the group.
Ann provided an update regarding the fundraising project for helping patients get to clinic. To date, $2500 has been raised, with 4 checks having been received. It was requested if "Thank You" letters could be printed to send with the tax deductible donation acknowledgement.
Laura, Jay, Richard, and Brian E. finalized the transportation information and presented a brochure detailing the different routes that those coming from outlying areas can take to get to clinic. The information was compiled into an easy-to-follow format and will be passed on to Meg to begin distribution to those in those areas. Once completed, Laura asked permission from the council to send an email to the team, indication that the project had been complete. No objections.
Laura recognized the hard and "behind-the scenes" work of two members, Ann and Jay for their contributions to the ACFAC/CF center partnership project: "Helping patients get to clinic". Ann led the fundraising piece while Jay spent hours personally checking the transportation routes with technical detail. Great job!
Laura followed up with Joan Forte regarding the idea of an Enterprise-run van-pool to assist with transport from the airport to Stanford. Stanford's shuttle only transports to the airport. It has been researched in the past by Stanford's Transportation Administrator for a way to facilitate transport to the hospital by working with airport shuttles. However, this was not able to be arranged. Enterprise does offer a van-pool, organized by the individual clinics' social workers and paid for by Stanford. This is another option, but would take a significant amount of coordination by the social workers. Laura to discuss this with Meg to see if it is a realistic goal worth pursuing.
Update on clinic operations. Please be reminded that if you have any concerns about clinic, that you may also contact Renita directly. Rosie has moved back to her original department, and she is being replaced by Karrie O'Neill. Her email is KO'Neill@stanfordmed.org
Next meeting set for Wednesday, March 20^th from 5pm to 7pm.

Action Items

Laura to bring Ed Day materials to Colleen (business cards, buttons and flyers)
Laura to meet with Kathy and Dr. Mohabir to get ideas for the next ACFAC/CF Center partnership project
Laura/Brian E. to discuss with Meg if the van-pool is a realistic and feasible goal

Sunday, February 17, 2013

2-20-2013 Agenda

Please have your own copy of the agenda and review the "attachments" to assist in cross infection control.

The Stanford Adult Cystic Fibrosis Advisory Council Agenda

Date/Time: Wednesday, February 20, 2013, 5:00pm-7:00pm

Location: Blake Wilbur Conference Room

COUNCIL BUSINESS: Please read all attached documents; they represent a lot of work from a lot of council members.

1. Introductions (5:00 – 5:10)

2. Adopt January minutes (5:10 – 5:15)

· Review minutes http://cfacmeetings.blogspot.com/2013/02/acfac-11613-meeting-minutes.html

3. Quality Improvement info (5:15 – 5:25)

· Inpatient/outpatient infection protocols (Kathy)

4. Stanford CF Education Day (5:25 – 5:40)

· Presentations, content, goals (Colleen)

· ACFAC presence

5. Patient-Family Centered Care: ACFAC / CF Center partnership project (5:40 – 6:20)

Supporting CF Center goal “helping patients gets to clinic”

· Fundraising’s fantastic results to date (Ann, Elyse): refer to materials at https://docs.google.com/file/d/0B7WrtjnOi5wMUWJWNVFvRE5xLWc/edit?usp=sharing

https://docs.google.com/file/d/0B7WrtjnOi5wMc0VNUVVERG9kV2s/edit?usp=sharing

· Who was Peter Judge? (Ann)

· Transportation’s final flyers (Jay, Richard, Brian E, Laura): see materials at

https://docs.google.com/file/d/0B7WrtjnOi5wMQmI3NTVwZGppcTA/edit?usp=sharing

https://docs.google.com/file/d/0B7WrtjnOi5wMamZoQ0NadVdfWUU/edit?usp=sharing

https://docs.google.com/file/d/0B7WrtjnOi5wMVU9fejlYek5pUEU/edit?usp=sharing

· Recognizing stealth ACFAC members (curious? good! you’ll find out Wednesday – Laura)

· Looking ahead to March: new council/center partnership project

6. Quick updates and check-ins (6:20 – 6:30)

· Peer2Peer program (Lauren)

· Clinic operations

7. Action items (6:30 – 6:40)

8. Date/time for next meeting: Wednesday, March 20, 5:00pm-7:00pm

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To attend this meeting via WebEx:

Topic: CF Patient Advisory Board
Date: Wednesday, February 20, 2013
Time: 4:45 pm, Pacific Standard Time (San Francisco, GMT-08:00)
Meeting Number: 808 786 852
Meeting Password: February

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To start or join the online meeting
-------------------------------------------------------
Go to https://stanfordmed.webex.com/stanfordmed/j.php?ED=197001842&UID=493120277&PW=NZjI yODVhYzVi&RT=MiM0

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Audio conference information
-------------------------------------------------------
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): 1-877-668-4493
Call-in toll number (US/Canada): 1-650-479-3208
Global call-in numbers: https://stanfordmed.webex.com/stanfordmed/globalcallin.php?serviceType=MC&ED=197001842 &tollFree=1
Toll-free dialing restrictions: http://www.webex.com/pdf/tollfree_restrictions.pdf

Access code:808 786 852

-------------------------------------------------------
For assistance
-------------------------------------------------------
1. Go to https://stanfordmed.webex.com/stanfordmed/mc
2. On the left navigation bar, click "Support".
To add this meeting to your calendar program (for example Microsoft Outlook), click this link:
https://stanfordmed.webex.com/stanfordmed/j.php?ED=197001842&UID=493120277&ICS=MS& amp;LD=1&RD=2&ST=1&SHA2=AAAAAvIqT8x/MsvboViMebAM5bTkzLLStW2norTlt70FSP3P

To check whether you have the appropriate players installed for UCF (Universal Communications Format) rich media files, go to https://stanfordmed.webex.com/stanfordmed/systemdiagnosis.php.

http://www.webex.com

CCM:+16504793208x808786852#

Tuesday, February 12, 2013

ACFAC 1/16/13 Meeting Minutes

ACFAC Meeting Minutes – January 16^th, 2013

Members Present: Laura, Lauren, Elyse, Colleen, Brian E., Jackie, Richard, Jay

Members Absent: Ann, Ed, Brian T.

Guests Present: Eric, Zoe, Kathy

December 2012 meeting minutes approved.
Update provided on clinic goals. These include emphasis on improving clinic visit attendance to every 2-3 months. Not only is this the recommendation of the CF Foundation, but research shows regular visits improve overall clinical outcomes. Ideas also introduced to improve visual display in the waiting room encouraging the theme of "partners in compliance" and working the clinic team.
Fundraising update provided by Elyse regarding the current project of raising funds to assist with transportation to clinic. The letter is ready to be sent and the plan is to have the letter sent out by February 14^th. Currently there is a list of people that the letter is being sent to. However, if as a member you would like to send a letter to one of your own contacts, that can be done as well. The two ways to do that are to contact Ann/Elyse and give them the address and they will send it out, or to let Colleen know and she will send you the letters and you may send them out.
Laura met with Meg to discuss the best method to present the information that was obtained from those researching transportation methods. Meg indicated to Laura that a handout, brochure-sized, and broken down by route plan from each of the city areas (Sacramento, Monterey, Salinas) to Stanford. Meg also asked that for the other topics, such as vouchers and childcare, that a message to talk to the social worker about options be placed in the brochure. Laura, Jay and Richard to work on the brochure.
The council continued the bylaw review.
The council voted in officers for 2013. Laura will continue as Chairperson, Jackie will continue as Secretary, Colleen will continue as Membership Chair, and Jay will continue as Website Revision Manager. Lauren decided to step down as Vice Chairperson, and Richard was nominated and accepted.
Lauren provided an update on the Peer2Peer program. Training has been completed and the mentors have been assigned mentees. "Remote" mentoring continues to be encouraged to abide by infection control protocols. Currently mentors are initiating contact with the mentees.
Colleen provided an update for the CF Ed day, which will be held on March 2^nd, 2013. Invitations being sent shortly. There will be a table designated for the council and a representative will have about 5 minutes to speak, if desired. For those who are unable to attend, the CF Ed day presentations are streamed live, and also videotaped and available from CFRI. Slides will also be available on the Stanford CF Website, and attendee books will be available. The CF Ed day follows the regular infection control guidelines, and the day is geared more towards caregivers and parents.
Laura provided an update on the voting for photos with bios on website. The vote was not unanimous, therefore, photos will not be placed at this time. A discussion was held regarding pros and cons, and ultimately decided that there may be more effective ways to let people know who the council members are. One example is the buttons that are available to wear for those who would like one.
Next meeting set for Wednesday, February 20^th from 5pm to 7pm.

Action Items

Laura, Jay and Richard to have a brochure to present by the next meeting.
Laura to follow up with Joan about the idea of a shuttle service.

Sunday, January 13, 2013

1-16-13 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

Date/Time: Wednesday, January 16, 2013, 5:00pm-7:00pm

Location: Blake Wilbur Conference Room

COUNCIL BUSINESS

1. Introductions (5:00 – 5:15)

2. Adopt December minutes (5:15 – 5:20)

Review minutes at http://cfacmeetings.blogspot.com/2013/01/acfac-12-19-12-meeting-minutes.html

3. Patient-Family Centered Care ACFAC / CF Center partnership project (5:20 – 6:20)

Current goal: supporting CF center goal “helping patients gets to clinic”

Clinic update: successful changes (Laura)
Fundraising update (Ann, Elyse)
Information delivery: effective format for social worker & CF team (Laura). See documents https://docs.google.com/file/d/0B7WrtjnOi5wMYmNGQWlnSDdZRWs/edit (Richard) and https://docs.google.com/file/d/0B7WrtjnOi5wMeFRRVTZPNU9BOXc/edit (Brian E)

4. Annual document review, part 11 (6:20 – 6:30)

All voting members, review our bylaws http://cfcenter.stanford.edu/acfac/documents/advisory_council_bylaws-final4-18-2012.pdf. Be ready for another “quiz” with prizes J

5. Quick updates and check-ins (6:30 – 6:45)

Peer2Peer program (Lauren)
Stanford CF Education Day 3/213 (Colleen)
Vote results: website bios; ACFAC buttons (Laura)

6. Action items (6:45 – 6:50)

5. Date/time for next meeting: Wednesday, February 20, 5:00pm-7:00pm

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To attend this meeting via WebEx:

Topic: CF Advisory Meeting - January
Date: Wednesday, January 16, 2013
Time: 5:00 pm, Pacific Standard Time (San Francisco, GMT-08:00)
Meeting Number: 804 571 559
Meeting Password: 2323

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To join the online meeting (Now from mobile devices!)
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1. Go to https://stanfordmed.webex.com/stanfordmed/j.php?ED=193817127&UID=0&PW=NMjllNjFhOGN j&RT=MiM0
2. If requested, enter your name and email address.
3. If a password is required, enter the meeting password: 2323
4. Click "Join".

To view in other time zones or languages, please click the link:
https://stanfordmed.webex.com/stanfordmed/j.php?ED=193817127&UID=0&PW=NMjllNjFhOGN j&ORT=MiM0

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To join the audio conference only
-------------------------------------------------------
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): 1-877-668-4493
Call-in toll number (US/Canada): 1-650-479-3208
Global call-in numbers: https://stanfordmed.webex.com/stanfordmed/globalcallin.php?serviceType=MC&ED=193817127 &tollFree=1
Toll-free dialing restrictions: http://www.webex.com/pdf/tollfree_restrictions.pdf

Access code:804 571 559

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For assistance
-------------------------------------------------------
1. Go to https://stanfordmed.webex.com/stanfordmed/mc
2. On the left navigation bar, click "Support".

To update this meeting to your calendar program (for example Microsoft Outlook), click this link:
https://stanfordmed.webex.com/stanfordmed/j.php?ED=193817127&UID=0&ICS=MRS3&LD =1&RD=2&ST=1&SHA2=AAAAAugwAzlV/EM7qFxiSxyONLh2F0dW6lUhhpUlylKVJhb0&RT=MiM0

WebEx will automatically setup Meeting Manager for Windows the first time you join a meeting. To save time, you can setup prior to the meeting by clicking this link:
https://stanfordmed.webex.com/stanfordmed/meetingcenter/mcsetup.php

The playback of UCF (Universal Communications Format) rich media files requires appropriate players. To view this type of rich media files in the meeting, please check whether you have the players installed on your computer by going to https://stanfordmed.webex.com/stanfordmed/systemdiagnosis.php.

Friday, January 11, 2013

ACFAC 12-19-12 Meeting Minutes

ACFAC December 19^th Meeting Minutes

Members present: Laura, Lauren, Elyse, Ed, Jay, Ann, Brian T., Richard, Colleen

Members absent: Jackie, Brian E.

Guests present: Rosie, Eric

November minutes approved.
Introduction of our newest member, Brian T.
Fundraising campaign: "Have a heart, help us out" update by Ann and Elyse. They presented their timeline: Letter to be mailed by Feb 7th, 2013. Discussed were issues concerning what mailing list will be used, if a suggested amount should be included on the letter and how the council feels about "asking for money." Ultimately it was concluded that mailing out the letter will be optional for each member. It was restated why fundraising for this particular issue is important to the council and its goals: that the clinic expressed that it would be helpful to have an additional 5,000 dollars to aid the travel expenses (gas cards, hotel vouchers, taxis) of target patients. Another issue brought up was whether this fundraising endeavor will be annual. As of now, it was decided that the fundraising effort is a trial run, with the possibility of it being an annual event. If it is successful (in raising the money AND improving attendance), the council will decide next year to do it again.
The council approved the "Have a heart, help us out" letter, budget, and timeline. The color option was chosen and $469.00 was budgeted towards it.
Laura presented the ongoing research by Richard, Brian E., and herself into transportation to clinic. She is going to talk to Meg about what format would be best to present the information collected. Then she will bring it back to the council for approval.
We had a quiz on the official council webpage. We... did alright.
Discussion was held regarding adding photos the council member bios on our webpage. The council will have an electronic vote and talk about it next meeting.
Elyse, Lauren and Jay discussed the Peer2Peer program. All have been matched with mentees. Also, there is an extended training session on the 14^th.

Action items:

All: Decide if you would like to participate in the fundraiser and contact colleen to "order" letters.
Laura: Talk to Meg about the best format to present the transportation information.
All: Decide on photos
Lauren/Laura: Newsletter blurb on the Peer2Peer Program