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NOVEMBER/DECEMBER 2016

Kossoff Lecture on Cystic Fibrosis at Columbia Presbyterian
By Lucas Mautner

 

(L-R) Phyllis Kossoff & Wendy Chung, MD, PhD
(L-R) Phyllis Kossoff & Wendy Chung, MD, PhD

Recently, the Department of Pediatrics of Columbia University’s College of Physicians and Surgeons hosted the 38th Stephanie Lynn Kossoff Memorial Lecture, presented by Wendy Chung, MD, PhD, the Kennedy Family Associate Professor of Pediatrics and Medicine, and Director of Precision Medicine, Irving Institute for Clinical and Translational Research, Columbia University. Organized by Phyllis Kossoff, a philanthropist and alumna of Columbia University, in honor of her late daughter, the lecture seeks to shed new light on cystic fibrosis research.

Dr. Chung’s lecture, titled “Precision Medicine for Cystic Fibrosis,” emphasized the importance of nutrition and early diagnoses in combating the disease. There are many parts of the world where it is difficult or impossible to follow basic treatment regimens and to access resources. In some cases, healthcare providers are unable to provide the care that could save lives. Columbia University’s global program at the Pediatric Cystic Fibrosis aims to be a resource to these communities in the fight to rid the world of a terrible disease.

Dr. Chung highlighted the importance of technology in diagnosing the disease early. “In terms of the diagnosis, it’s been interesting to me in the post-genetic era,” she said. “We used to wait and see symptoms, but we’re now in a genetics-first era, which starts with newborn screening and even pre-natal screening.” Screening, when combined with early treatment, can raise the life expectancy of children with the disease.

Cystic fibrosis is a deadly genetic disorder that primarily affects the lungs. According to the Cystic Fibrosis Foundation, there were 959 newly diagnosed patients in 2013, of which 62% were detected by newborn screening. In 1998, out of 992 newly diagnosed patients, only 5.7% were detected by newborn screening. Cystic fibrosis caused 414 deaths in 2013, and the median age at death was 27.5. The disease causes difficulty breathing, including frequent lung infections that produce mucus, as well as other symptoms like poor growth or clubbing of the fingers and toes. There is no known cure for cystic fibrosis.

Phyllis Kossoff founded the Cystic Fibrosis Foundation in memory of her daughter, Stephanie Lynn Kossoff, who lost her life as a freshman at Barnard College after living with the disease for 19 years. Today, the Cystic Fibrosis Foundation is the world’s leading force in financing research and spreading awareness to eradicate the disease. #

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