The Cystic Fibrosis Family Advisory Council (CF FAC) at Nemours Children’s Hospital, Delaware 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
- developing educational/informational materials for families dealing with a new CF diagnosis
- hosting CF care team appreciation events
- hosting lunch and learn events so parents and caregivers can meet with each other and staff to share information and support
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 held in conjunction with Christiana Care in which both pediatric and adult CF patients and their families participate.
CF Lunch & Learns
Lunch & Learn 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:
- mealtime challenges, weight gain, and nutrition
- CF-related diabetes
- school-related issues (from elementary school through college), including IEPs and 504 plans
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:
Recruits members and maintains our membership rosters.
Contact Bethann Devenney »
Maintains the council’s website and develops brochures and other media for CF patients and families.
Contact Eileen Abscher »
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 Cheryl Wolf »
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 Support Group
Support and resources to help all families cope with the challenges of CF.
From Nemours' KidsHealth.org
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
Cystic Fibrosis Advisory Council
Nemours Children’s Hospital, Delaware
c/o Cystic Fibrosis Clinic
1600 Rockland Road
Wilmington, DE 19803