Donation to enhance research, care for kids with cystic fibrosis

LOUISVILLE, Ky. (June 27, 2017) – In an effort to boost care for children in our region with cystic fibrosis (CF), Cure CF Inc. has announced a gift of $300,000 to Norton Children’s Hospital through the Children’s Hospital Foundation. The funding will bring additional clinical research trials to Norton Children’s Hospital in collaboration with specialists from University of Louisville Physicians/UofL Pediatrics and support additional specialists, including a specialized nutritionist and pharmacist to address the special needs of CF patients.

“Cure CF is cognizant of the need to better the care of CF patients and families in Kentuckiana,” said Joseph Klausing, executive director, Cure CF. “We are hopeful that the cure for CF will be found through our pledge, as access to state-of-the-art research, clinicians and clinical trials will now be available to our local patients.”

“Cure CF is setting the stage for a long-term vision of the care we can provide to children with cystic fibrosis and other respiratory issues,” said Lynnie Meyer, Ed.D., R.N., CFRE, chief development officer, Norton Healthcare. “This truly is a foundational gift, and Cure CF is showing great leadership in recognizing some of the issues our children face.”

The Children’s Hospital Foundation has committed an additional $400,000 in support of this project, bringing the total amount for CF support to $700,000.

The gift is part of a long-term vision for the hospital and the University of Louisville to create a more comprehensive program to treat CF and respiratory issues, including establishing a dedicated center, adding respiratory care specialists and expanding research programs.

Respiratory-related issues are the top diagnoses for children who are admitted to Norton Children’s Hospital, resulting in 1,600 hospitalizations. These illnesses also cause more than 8,000 outpatient visits at Norton Children’s.

While the top three issues are asthma, bronchiolitis and RSV pneumonia, CF falls within this area and requires often extensive, life-long 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. Patients must use a variety of treatments to loosen mucus and ease breathing, including percussion vests and medication.

“There is no cure for cystic fibrosis, but we can help with symptoms and slow the progression of the disease,” said Nemr S. Eid, M.D., pulmonologist with Norton Children’s and division chief of pulmonary pediatric medicine with UofL Pediatrics. “Bringing additional clinical trials to Louisville provides other options to help children with this disease.”

The current life expectancy for a person with CF is close to 40 years old, a large improvement from just 55 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 percent of the new diagnoses are in children under age 2. Specialists with UofL Physicians and Norton Children’s Hospital closely follow more than 135 CF patients in our area

About Norton Children’s Hospital

As Kentucky and Southern Indiana’s only full-service, free-standing pediatric hospital, Norton Children’s Hospital, along with its predecessor hospitals, have cared for children for more than a century without regard to their families’ ability to pay. The 300-bed hospital is Louisville’s only Level I Pediatric Trauma Center and serves as the primary pediatric teaching facility for the University of Louisville School of Medicine. Specialists offer comprehensive pediatric care, including a full range of services for congenital and acquired heart disease, cancer care, neurosciences, spine and orthopedic care, and neonatal care.

Norton Children’s Hospital and its sister facilities rely on support from the community through the Children’s Hospital Foundation. The foundation raises millions of dollars each year to advance world-class programs and services through workforce development, facility enhancement, equipment and research. More information is available at NortonChildrens.com. 

About Cure CF
Cure CF Inc. is a local philanthropy dedicated to finding a cure for cystic fibrosis. Comprised of parents of CF kids and friends and business partners striving to eradicate this disease, Cure CF is a 100 percent volunteer-based board, donating every dollar raised to CF research and support. Learn more about Cure CF’s signature fundraising event, CRAFT, by visiting them on the web at www.craftlouisville.com or on Facebook at Cure CF Inc.


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