Cystic Fibrosis Advisory Council

The Cystic Fibrosis Family Advisory Council (CF FAC) at Nemours/Alfred I. duPont Hospital for Children is an energetic, optimistic group of parents with children of all ages living with cystic fibrosis (CF). We work closely with the CF care team of pulmonologists, nurses, respiratory therapists, physical therapists, dieticians, and social workers, to help improve the care for all kids with this very complex, high-maintenance pulmonary condition.

About Our Cystic Fibrosis Advisory Council

Meetings: Quarterly on the third Monday

The CF FAC is here to help families like yours stay informed about their child’s condition, get involved in their child’s medical care, and manage daily living.

As the first hospital/family partnership formed around a specific condition, we’ve accomplished many things, including:

  • advocating for processes and procedures that resulted in better care
  • creating an online forum for parents to post questions, share information, and offer support
  • developing a blog about the hospital’s CF care team and available resources
  • developing educational/informational materials for families dealing with a new CF diagnosis
  • creating a forum bringing health care providers and parents together to share information
  • hosting CF care team appreciation events

Learn More

Cystic Fibrosis Advisory Council brochure (PDF) »

Our Projects & Initiatives

We always have something in the works, whether it’s participating in fundraisers (wine tastings, charity walks), attending conferences, or planning regularly-scheduled events like education days and roundtable discussions.

CF Family Education Days

CF Family Education Days are learning events hosted onsite at the duPont Hospital for Children and at area pediatric partner hospitals.

CF Roundtable Meetings

Roundtable events are wonderful opportunities to meet CF care providers, adults living with CF, and other special guests who lead discussions about importation CF issues. Previous topics covered:

  • advocating for your child at school
  • mealtime challenges, weight gain, and nutrition

Find Cystic Fibrosis Advisory Council on Facebook

How You Can Participate

We’d love to have you as a council member, whether it’s to provide general support, help with a specific project, or serve on one of our committees: 

Membership Committee

Recruits members and maintains our membership rosters.
Contact Leslie Gill »

Technology Committee

Maintains the council’s website and develops brochures and other media for CF patients and families.
Contact Jen Jeffery »

Advocacy Committee

Raises awareness in the community and shares information and concerns with hospital staff, as well as federal, state, and local legislators.
Contact Kerry Doyle Shannon »

Quality of Care Committee

Creates and accomplishes targeted goals for improving clinical care.
Contact Bethann Deveney »

Join Us

If you’re interested in joining us in any capacity, please contact any of our members listed above. We sincerely appreciate all of our family volunteers who work so hard to improve the care of kids with CF.

You don’t have to be a member to benefit from our services. We encourage you to contact us if you need anything or would like to share your thoughts and ideas.

Cystic Fibrosis Resources & Forums

Cystic Fibrosis Forum

Yahoo LISTSERV: Online forum for families who are seen at duPont Hospital for Children to openly share their feelings, ideas, and information.
Contact Kim York to join »

Cystic Fibrosis Support Group

Online and in-person support to help all families cope with the challenges of CF.
Contact Kim York for more information »

From Nemours'

Nemours’ online resource provides valuable, physician-reviewed information about living with CF, including specific tests, healthy recipes, and articles about the condition written for kids, teens, and parents.

More Trusted Websites

Forms & Downloads

Clinic Worksheet (PDF)

Contact Us

Kim York, Coordinator

Phone: (302) 651-4806

Cystic Fibrosis Advisory Council

Nemours/Alfred I. duPont Hospital for Children
c/o Cystic Fibrosis Clinic
1600 Rockland Road
Wilmington, DE 19803