Mission:    Connecting families and providing a forum for family voices to be heard in the Cystic Fibrosis Center

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Summer Bulletin Board 2008

• Last meeting 7/28/08
• Carlos Milla, MD to provide conduit between PAG and the CF Center.
  With the changing structure of the CF Clinic: more staff, changing clinic patterns, the PAG must have a formal role in this new clinic structure. Parents should continue this connection with the clinic and be a part of the center infrastructure. There must be a partnership between parents and clinics, a place for parental input.
• Specific to the PAG:
  Formal monthly meetings with Dr. Milla providing updates on clinical concerns and Colleen Dunn reporting on research issues. A bulletin board on the CF Ctr website w/ monthly updates. Coverage of the PAG in the Ctr Newsletter. A table at CF Ed Day. Ongoing efforts to make infection control issues flow seamlessly from LPCH to SUH. Including parents in the complex system that is LPCH/SUH.
• Research update from Colleen Dunn:
  With at least double the number of research volunteers needed in 2009 in order to complete proposed studies in Cystic Fibrosis, the PAG can reach out in their mentoring role to explain the need for research and the need for participation in research. (CFF consent is the 1st intro to research. Point out that research can be almost unnoticeable….. merely a collection of data.)
• Next meeting date will be in one month, exact date to be determined by meeting space availability.

Who We Are:     A group of concerned parents from the Stanford CF Center and some of the CF Clinic staff.

History:    Since its inception in about 2003, the group has authored many projects including a Saturday class for New Parents, social attempts for new parents, a scrapbook in clinic, a family survey, assistance with the transition team, parent mentoring, and an educational brochure: A Guide for the Extended Family and Friends.   To view the brochure: Supporting Loved Ones

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