Honoring One Year of ‘Courage to Care’

Honoring One Year of ‘Courage to Care’

Last weekend, my column turned 1! There were only a few weeks in the past year that I did not write a post for Pulmonary Fibrosis News. This means that I have had about 50 opportunities to share my family’s story with the world. I have tried to…

Loss of NEDD4-2 Triggers IPF in Adult Mice, Study Finds

Loss of NEDD4-2 — a protein involved in the regulation of airway hydration and mucus clearance — leads to the onset and development of typical manifestations of idiopathic pulmonary fibrosis (IPF) in adult mice, a study has found. These findings, along with the establishment of a new animal…

I’m Feeling Bad — and That’s Good

This past week, I felt things. Like, I really, finally felt things. They were real feelings, not forced, and came without judgment. It’s been longer than I want to admit since I have experienced any emotion without it being tainted by anxious judgment. I have written many columns…

Why I’m Feeling Grateful During the COVID-19 Pandemic

Self-isolation has become a form of survival for those with pulmonary fibrosis during the COVID-19 pandemic. I am a single-lung transplant recipient and have a compromised immune system. COVID-19 can devastate a perfectly healthy person, and someone with my current state of health is at even greater risk. The self-isolation…

NORD Webinar Outlines COVID-19 Response on Financial, Policy Fronts

As the number of Americans infected with COVID-19 surpasses one million, it’s no surprise that people with rare diseases — whose immune systems were generally compromised even before the outbreak — are particularly terrified of this pandemic. That fear is evident in an online survey conducted by the…