The FDA approval of the CFTR modulator, Kayldeco, in 2012 changed the paradigm of CF healthcare by providing a therapy to address the underlying cause of the disease. The previous paradigm in CF care was limited to only treat the symptoms of CF, such as inflammation, bacterial infection and…
Stephen’s Weekly CF Column
Stephen is working on a PhD in biomedical sciences at the Kansas University Medical Center in Kansas City, Kansas. He performed extensive research in a neuroendocrinology lab as an undergraduate, studying the effects of brain injury on the development of post-traumatic stress disorder. Upon completion of his BS at Wheaton College, he worked as a high school science teacher before entering his current PhD program. Stephen also has cystic fibrosis.
Stephen Shannon -- Stephen's Weekly CF Column
Just Breathe: Adults living with Cystic Fibrosis is a newly released book that captures the human experience of Cystic Fibrosis through a series of simple, yet complex portraits of adults living with the disease. Readers will find themselves transfixed as each page brings a new face, challenging…
Dorothy Andersen, M.D., was the first to write a full report describing cystic fibrosis in 1938, and since her initial writings, gradual improvements have been added to improve CF health management for patients. Technological improvements have assisted doctors and researchers at each step as new therapies, drugs and devices have…
In a previous article I referenced the first portion of the Nature Review, “cystic fibrosis genetics: from molecular understanding to clinical application,” written by Dr. Garry Cutting, to provide a basic understanding of the function of the CFTR protein and its role in the…
Cystic fibrosis was ushered into the spotlight during President Barack Obama’s 2015 State of the Union Address as he highlighted the advances in CF therapy, which have served as a model for the President’s precision medicine initiative. Precision medicine paves the way for the development of therapies that are tailored…
Although I am a student in a biomedical science program I have only begun in the past two years to educate myself in issues relating to Cystic Fibrosis. When I was growing up I tried to hide from any literature relating to CF in hopes that the disease would feel…
In November, the Cystic Fibrosis Foundation sold their royalty rights for CF related drugs developed by Vertex Pharmaceuticals for $3.3 billion. The number is staggering and it was the largest sale of its kind, leaving the Foundation seemingly swollen with its sudden cash…
My little sister, Jennifer, was a beautiful woman who, like myself, fought Cystic Fibrosis throughout her life and on Saturday, February 7, she passed away at twenty-three after her body rejected the set of lungs she had received by transplantation the previous October in Denver, Colorado. Cystic Fibrosis, like other…
In this week’s editorial column, Cystic Fibrosis News Today’s Stephen Shannon sounds off on the recent news of the Cystic Fibrosis Foundation‘s recent $3.3 billion royalty sale involving Vertex’s Kalydeco, the ensuing controversy over the deal in some corners of the media, and why he thinks the venture philanthropy model works. On…
In his first weekly column for Cystic Fibrosis News Today, PhD student and CF patient Stephen Shannon talks candidly about what the ongoing search for a cure for Cystic Fibrosis means to him, and why there is great reason for Hope. I was two years old when I was diagnosed…
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