Photo courtesy of Kevin Schaefer Day 28 of 30 This is Kevin Schaefer’s story: Four years ago, I accepted a position at Bionews Services, the parent company of Pulmonary Fibrosis News. Having lived with a neuromuscular condition called spinal muscular atrophy my entire life, I already had a…
30 Days of PF: An Outsider’s Perspective
The dynamic between an ill person and the loved ones who care for them should extend beyond the caregiver providing and the sick person receiving. The relationship should go two ways — thus, a care partnership. I define a care partner based on a presentation given at the Pulmonary…
Syndax Pharmaceuticals and Incyte are forming a global partnership to develop and commercialize axatilimab, an investigational therapy for idiopathic pulmonary fibrosis (IPF) and other diseases characterized by excessive scarring. The companies are planning to launch a proof-of-concept Phase 2 clinical trial to test axatilimab in IPF patients…
Photo courtesy of Andrew Mooney Day 27 of 30 This is Andrew Mooney’s story: I was diagnosed with IPF nine years ago and am living with my condition as best I can. My wife, Lyn, has been at my side from the start and has been a constant…
The levels of Sox9 — a molecule that promotes lung scarring, or fibrosis — are significantly higher in the lungs of both patients and mouse models of idiopathic pulmonary fibrosis (IPF) than in those of their healthy counterparts, a study shows. Excessive Sox9 levels were found to promote fibroblasts’ maturation…
Photo courtesy of Shari George Day 26 of 30 This Shari George’s story: “Ma soeur.” Strange how a pet name can become so important, like a code that transmits more than the actual words. French for “my sister,” these words evoke so many memories — and the memories are…
Photo courtesy of Holly Patient Day 25 of 30 This is Holly Patient’s story: I don’t know exactly when my IPF journey began. Was it on that hike, when I felt dizzy and out of breath? Was it that time when I fell skiing and literally could not…
Photo courtesy of Jofac O’Handlin Day 24 of 30 This is Jofac O’Handlin’s story: My story begins when my wife and I each suffered a bout of pneumonia in February 2013. When it came to recovery, Susan came out of it much sooner than I did, and the X-rays…
On Mother’s Day in 2019, I walked into the ICU on the ninth floor of University of California, San Francisco’s Parnassus campus for the last time. It had been a month since my mom, Holly, was discharged from the hospital there after having a bilateral lung transplant. Although I…
Football and science seem to be disparate fields of play at first glance, but the nonprofit Uplifting Athletes is finding common ground by leveraging the popularity of college gridiron games to fund research for rare diseases. Its nearly two dozen chapters — representing college football teams across the nation…
