Stanford Adult Cystic Fibrosis Patient & Family Advisory Council

Date/Time: Wednesday, August 28th, 2019 from 5:30pm-6:50pm 

Location: WebEx

Members should get set up 10 minutes before the scheduled meeting time using the link provided in the green button on the WebEx email or the link at the bottom of the form.  It is recommended you call in for audio as opposed to using your computer.

 

Advisory Council visitors are welcome.  Please have this copy of the agenda and attachments with you during the meeting.

 

Agenda

1.    Adopt May minutes (5:30)

Please review Shawn’s minutes on the blog or via his email previously sent to you

2.    Project Update (6:00 – 6:30)

a.    Memorial Space at Stanford – Ed and Colleen
Artwork selected, next step plaque wording

b.    CF Encounters – Jacob
Has some ideas and will begin to develop them once school has ended

c.    Virtual Clinic Proposal/Online Collaboration – Amy
No update from Russell – will continue to pursue, residents arrive in July.

d.    Bodywork & Value for CF Patients – Olivia/Jacob
Project scope will be defined, reviewed at next meeting

e.    Additional Stanford Volunteer Activities – Shawn/Olivia/Elyse
Walk with Me end of year event coming soon, highly recommended

f.     Something I would like to talk about in August is maybe creating a system in which we could keep track and reach out to our CF patients in case of some type of disaster or emergency.  This way we could see if they are all right or need some type of assistance.

g.    Clinic-Patient Opportunities – Shawn/Kate
As needed

h.    MyHealth update – Shawn
No further information

i.      New Member Drive
Reminder – reach out to CF patients if you are leading a project

3.    Reminders

a.    Publicize council and council activities

b.    Continue to complete volunteer requirements

c.    Future Projects

i       Family Planning – TBD

ii      Inpatient Preparedness

Final Comments/Discussion (6:30 – ???) 
Next meeting September 25th, 2019