"Why do you participate in the network & what are your hopes for the network?"

Kristina Dingus-Keuhlen - Community Innovator, Texas

I’m a 30-something, married to my best friend, Nick! We have the privilege of being a full-time auntie and uncle to our ten-year-old nephew, Jack, in a multi-generational home including my dad! We are lovers of music, dancing, travel, and animals. We have a suburban farm within the city, including four dogs, two bunnies, two birds, and a giant fish tank full of aqua friends!

My best friend’s daughter was diagnosed with CF in utero. Over the past ten years I have witnessed their journey: the struggles, highs and lows, uncertainty, hospitalizations, successes, and the excitement of medical advances helping to create a better quality of life for the entire family. My “niece” and best friend are two of the strongest, bravest, and fashionable ladies around. I’m honored to be a small piece of their lives. I’ll do everything I can to help find a cure so they are able to celebrate as many tomorrows, together, as possible.

I stumbled across the CFLN one day as while looking for CF and mental health data as I prepared another paper for my PhD program. One of my topics of interest is medical family therapy, particularly within the CF community. I’m a Doctoral Candidate who has reached dissertation phase. My research is to identify the biopsychosocial needs of individuals with CF and their caregivers. I seek to determine the specific need for mental health education, awareness, and implementation for this demographic. Anxiety, depression, quality of life, marital satisfaction, and how to best incorporate systemic mental health care into the care centers moving forward are my focus.

As a Marriage and Family Therapist Associate, I’m a passionate advocate for mental health awareness in all realms. The CF community astounds me: from their acceptance, partnerships, tenacity in fundraising and vocalizing the need for a cure and better treatment, to the collaborative nature of the Care Teams, this is a phenomenal group full of inspiring individuals!

Inside and outside the therapy room I believe having a daily mindfulness practice focused on being present, gratitude, and unrelenting positivity are key contributing factors to finding joy in our individual pursuits of happiness.

My hope is to contribute my talents as an emerging researcher to help incorporate mental health treatment into the already amazing collaborative care model and to help improve overall quality of life for all families who have a loved one with Cystic Fibrosis.

Carrie Stradley - QI Coordinator, Cook Children's Medical Center

From the beginning of our QI journey with LLC6, we have seen true change from our PDSA’s and smart change ideas. These changes have been evident throughout our clinic as well as for our patients and families. When asked to join the CFLN, we were a little apprehensive. We had a lot of new staff and were concerned we would not have the “right stuff”. One of our biggest questions was who would be our physician leader and the coordinator?

Ultimately, we wanted to rev up our process and have the opportunity to learn and collaborate with other centers. An added benefit was to learn how to improve family engagement and the process of co-production.

Several members of our QI team as well as our parent partner were relatively new to QI. The CFLN has provided a great starting place for those new to QI as well as a good review for the more seasoned members of our team. This has allowed us to refocus our efforts on the necessary steps to improve care and develop new skills along the way!

Being part of CFLN keeps us accountable and always pushes us to do more. After each conference we come back with new goals and ideas. We appreciate when our coaches remind us that we can’t do everything at once. Another invaluable benefit is the protected time away from other responsibilities to devote to team discussion and planning.

Hopes for our team and the CFLN include aspirations to continue to make an impact on our patients and families for many years to come. We truly understand the value of collaboration with other care teams. CFLN not only makes collaboration with other centers possible, but they also foster and fully support this process. Through the help and guidance of CFLN we will continue to strive to make our patients and parents partners in their care. Ultimately, we want to be a part of making more tomorrows!