In Louisville, children diagnosed with CF now have access to numerous clinical research trials and treatment options through the Norton Children’s Cystic Fibrosis Program

Story by: Maggie Roetker on August 18, 2020

During the past 70 years, great strides have been made in developing treatments for cystic fibrosis (CF). A child born with the disease once had little hope of attending school, but today they are living into adulthood, graduating from college, having successful careers and getting married.

In Louisville, children diagnosed with CF now have access to numerous clinical research trials and treatment options through the Norton Children’s Cystic Fibrosis Program, thanks to the support of donors who are driven to find a cure. This new gift will further increase the work being done to save children.

Louisville-based Cure CF Inc. has announced a $2 million gift to the Norton Children’s Hospital Foundation. This gift is in addition to $300,000 given by Cure CF in 2017 and $180,000 in 2019. An additional $500,000 is being given by the Norton Children’s Hospital Foundation as part of Cure CF’s efforts to support research and strengthen what currently is available to children in this region.

“The families who are part of Cure CF have seen firsthand the challenges that come with cystic fibrosis,” said Joseph Klausing, executive director, Cure CF Inc. “Our ultimate goal is to see a cure for cystic fibrosis, and the way to do that is to fund research and build centers that offer the latest care for children and families dealing with this disease.”

People with CF require extensive, life-long specialty treatment. The genetic disease causes recurring lung infections and difficulty breathing. The disease is known for its sticky mucus buildup in the lungs, pancreas and other organs. People with CF must use a variety of treatments to loosen mucus and ease breathing, including percussion vests and medication; and all have different needs and responses to therapies.

“The support of the community can really help us further advance the care that our patients with cystic fibrosis receive,” said Nemr S. Eid, M.D., pediatric pulmonologist, Norton Children’s Medical Group. “We’ve seen great advances over the years and thank Cure CF for their gift that will make a large impact.”

The gift from Cure CF will allow Norton Children’s and the University of Louisville School of Medicine to bring an additional CF specialist to Louisville as well as expand patient access to clinical research trials and care options.

“This is a multifaceted disease that requires a multidisciplinary approach to management, especially in working to develop new drugs that get down to the basic defect in CF,” said Kimberly A Boland, M.D., professor and chair of pediatrics and pediatric hospitalist with Norton Children’s Inpatient Care, affiliated with the UofL School of Medicine. “Additional researchers and physicians allow more individualized management of patients, expansion of care programs and additional research.

“Our current research initiatives have allowed us to be involved with development of some very exciting new medications that have been highly effective at helping the majority of CF patients. We’re excited to see additional funding that will bring even more innovation to Louisville.”

“Cure CF’s gift will help transform the care we can provide to children with cystic fibrosis,” said Lynnie Meyer, Ed.D., R.N., CFRE, senior vice president and chief development officer, Norton Healthcare. “We are grateful for their leadership in not only recognizing the issues our children face, but taking care and research to the next level.”

The current life expectancy of a person with CF is close to age 40, a large improvement from around 60 years ago when it was 10. More than 30,000 people in the United States are living with CF, with another 1,000 diagnosed each year, according to the Cystic Fibrosis Foundation. More than 75% of new diagnoses are in children under age 2. Specialists with UofL and Norton Children’s closely follow more than 135 children and teens with CF in our area.

The Norton Children’s Cystic Fibrosis Program is one of 120 in the United States accredited by the Cystic Fibrosis Foundation. It is part of the Cystic Fibrosis Foundation Therapeutics Development Network, which works to bring new therapies to people with CF.

Led by Norton Children’s Pulmonology, affiliated with UofL School of Medicine, the program offers an interdisciplinary team approach to managing this complex disease and provides care for children and teens as they transition into adulthood. Each child’s care team includes physicians, nurses, respiratory therapists, nutritionists, social workers and child life specialists.