Stanford Adult Cystic Fibrosis Patient & Family Advisory Council

Date/Time: Wednesday, September 25, 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 August minutes (5:30)

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

2.    Project Update (5:35 – 6:15)

a.    Virtual Clinic Proposal/Online Collaboration – Amy/Brook Betts
Update

b.    Memorial Space at Stanford – Ed
Waiting to review final wording, location of artwork

c.    CF Encounters – Jacob
Sent email to Sarah Foad to see how to engage w/ Stanford efforts, will check again

d.    Bodywork & Value for CF Patients – Olivia
Has been collecting information related to bodywork highlighting benefits, primarily focused on children and young adults.  Will summarize as a resource for patients.

e.    Additional Stanford Volunteer Activities – Shawn/Olivia/Elyse
Walk with Me end of year event went very well, highly recommended, starts again in September

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

g.    MyHealth update – Shawn
App includes an inpatient section of MyHealth that is very informative and provides immediate access to test results

h.    Inpatient Preparedness – Shawn

Initial ideas

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

4.    Final Comments/Discussion (6:15 – ???) 
Next meeting October 23, 2019