CF Family Advisory Council: A Partnership Amy Baugh and Kirsten McGowan Lead Parents March 16, 2019

Our Mission To work in partnership with the pediatric CF clinic care team to provide the highest quality of care and service to patients and families. Who Are We Team: Carlos Milla, MD Mary Helmers, RN, BSN PHN Colleen Dunn, RRT, CCRC Zoe Davies, PNP Russell Wise, Pharm D Candace Middleton, RTT Teresa Priestley, SW Cathy Hernandez Julie Matel, MS, RD, CDE Parents: Amy Baugh Kirsten McGowan Arek Puzia Rohini Thukral

Family Centered Care Family Centered Care promotes partnerships between patients, families and healthcare providers to help navigate patient care FCC Department at Stanford Children’s: 45 paid, trained parents Provide family voice on policy, programs and clinical care Advisory Councils Committees Process Improvement Parent Acting Parent Mentoring Parent Presentations Patient Safety

What We Do: Projects And Duties Been in practice since 2003 Develop support materials: Transition guides, binder inserts, G-tube information, etc. Enhance communication between Care Team and families Serve as a voice for families receiving care at Stanford. Website CF Newsletter Website Feedback: http://med.stanford.edu/cfcenter Facebook (recipes weekly!) Sit on hospital-wide FAC and Patient Safety committees to provide feedback that will impact CF patients/families Newsletter

Current Projects Updating documents for the "Binder Project” Transition Document Providing feedback for the setup of the CF specialty pharmacy Strengthen collaboration with Adult Advisory Council to promote transition success for teens/young adults COME JOIN US! BECOME A PARENT ADVISOR! kmcgowan@stanfordchildrens.org or abaugh@stanfordchildrens.org

Thank You