Ways to celebrate — yes! — life with a rare disease

My mom, Holly, was diagnosed with idiopathic pulmonary fibrosis (IPF) in 2018. An acute exacerbation booked her a one-way ticket to the intensive care unit for a four-month wait for new lungs. Less than one year after her diagnosis, she emerged from an operating room at the University…

Five new Pulmonary Fibrosis Foundation (PFF) scholars will each use $100,000, granted over the course of two years, to research new ways to diagnose, treat, or manage pulmonary fibrosis (PF). The six-year-old program awards grants each year to help scientists improve their understanding of PF, a chronic…

“I’m sorry” is a simple, two-word phrase I’ve used many times. For me, it can take two forms: It can be a statement of regret, or it can be a question. Because of my hearing loss, I use the latter to indicate that I need someone to repeat what was…

It has been two months since I last shared my thoughts in this column, and in that time, life has unfolded in ways I could never have anticipated. The lessons I’ve learned during this period have been profound, leading me to confront the blatant reality that life rarely adheres…

A Phase 2a clinical trial has finished testing the experimental therapy ENV-101 (taladegib) in people with idiopathic pulmonary fibrosis (IPF), according to its developer, Endeavor BioMedicines. Endeavor did not include in its announcement any specific data from the trial, but John Hood, PhD, the company’s co-founder, CEO, and…

When I was diagnosed in January 2017 with idiopathic pulmonary fibrosis (IPF), I had gone under anesthesia only twice in my 59 years. Since my diagnosis, and especially following my bilateral lung transplant in 2021, I’ve required different types of anesthesia for more than 30 procedures. Most…

Bersiporocin, an oral therapy for idiopathic pulmonary fibrosis (IPF) now being tested in a Phase 2 clinical trial, has been granted orphan drug status in Europe by the European Medicines Agency (EMA). The EMA gives this designation to treatments that have the potential to improve care for people with…

When I was diagnosed with idiopathic pulmonary fibrosis in early 2017, my care team went to work ensuring my quality of life was the best it could be given the circumstances. A bilateral lung transplant in 2021 offered me a second chance at life, but getting the transplant required a…

For the 14th year, a cast of Broadway luminaries will take the stage for the Pulmonary Fibrosis Foundation’s (PFF) largest fundraiser, Broadway Belts for PFF! The March 18 gala, which may also be viewed virtually, will raise funds and awareness for the more than 250,000 U.S. residents thought to…

Seven years ago, I sat in a hospital examination room in shock. I had just been diagnosed with idiopathic pulmonary fibrosis (IPF) and given two to five years to live. The doctor suggested I get my affairs in order. Then, before I knew it, my care team had begun…