Who We Are
A community of families and healthcare partners dedicated to improving the lives of those living with Cystic Fibrosis.
Mission
The Intermountain Cystic Fibrosis Parents' Advisory Council is a resource to families affected by Cystic Fibrosis in the Intermountain area.
We provide a collaborative partnership for pediatric families affected by CF and the Primary Children's CF Center to promote the delivery of Patient and Family Centered Care — improving the lives of all those living with Cystic Fibrosis.
The PAC is organized as a 501(c)3 nonprofit organization and is a separate entity from the Primary Children's CF Center. All decisions related to PAC funds, resources, and PAC-led events are decided with input from Clinic Liaisons and a majority vote from PAC voting positions.
Purpose
The PAC serves as an advisory council in collaboration with Primary Children's Pediatric CF Center to provide a diversity of perspectives in matters relating to care for pediatric patients — enhancing quality, safety, and experience of care.
We strive to connect and support CF families in the Intermountain area by providing additional resources, connection events, and educational opportunities.
Goals & Responsibilities
The PAC is committed to strengthening the relationship between CF families and their care team.
Our Team
The PAC is led by an elected leadership team supported by chair positions, committee members, and clinic liaisons.
Oversees all PAC positions and programs. Facilitates meetings, mentors the Chair-Elect, and coordinates closely with clinic liaisons.
Assists the Chair and learns from them during their term. Represents the PAC at CF Foundation meetings if no CF Foundation Chair is serving.
Manages meeting logistics, creates agendas, records and distributes minutes, and oversees communications with committee members.
Tracks PAC finances, manages reimbursements, works with accountants on tax filings, and presents financial updates at meetings.
Oversees all PNO events — scheduling, speakers, committee coordination, and venue logistics.
Organizes connection events for CF families in Idaho and Southern Utah communities.
Liaison to the clinic QI team, identifies opportunities for PAC-led quality improvement projects.
Main liaison to the UT/ID CF Foundation chapter, attends board meetings, and organizes volunteer opportunities.
Oversees all PAC communications — email, social media, texting platforms — and develops the annual communication plan.
Oversees Newborn Kits, Inpatient Gifts, and any additional special programs created by the PAC.
Volunteer CF clinic team members who attend PAC meetings, assist with clinic process improvements, and keep the PAC informed of clinic updates.
Past PAC Chairs who serve in an advisory role to the current leadership team. Legacy members are voting positions when present.
Membership
PAC membership is open to parents or guardians of pediatric CF patients (up to age 18) seen at the Primary Children's Pediatric CF Center.
Nominees are welcome from any area or state with patients seen at the CF center — ensuring the PAC's membership reflects the diversity of families it serves.
PAC Members volunteer their time and talents and are not compensated for their service.
Get InvolvedElection Process
Open roles for each term are posted online via social media and email. Nominations open no later than September 1st and close October 1st.
A selection committee reviews nominees and prepares a list by November 1st. The full PAC votes by November 10th, and new members are welcomed at the November meeting.
Leadership positions serve 2-year terms beginning January 1st. The Chair serves one consecutive term before transitioning to the Legacy Committee or another role.