When I was diagnosed with idiopathic pulmonary fibrosis (IPF) in January 2017, I became a patient at the Inova Fairfax Hospital’s Advanced Lung Disease and Transplant Center in Virginia. Inova is one of 81 locations included in the Pulmonary Fibrosis Foundation’s Care Center Network (CCN). One…
Social workers play an integral role on my healthcare team
Being exposed at work to medium or high levels of asbestos is associated with a near double risk of developing idiopathic pulmonary fibrosis (IPF) for cigarette smokers, according to a recent U.K. study involving men. The association between asbestos, smoking, and IPF was especially strong in people with a…
Carestream Health and the Open Source Imaging Consortium (OSIC) are collaborating in the OSIC Pulmonary Understanding Study, dubbed Project OPUS — a pilot study to uncover X-ray markers for the early diagnosis of idiopathic pulmonary fibrosis (IPF). Project OPUS will make use of artificial intelligence, or…
Long before learning I had idiopathic pulmonary fibrosis (IPF), I supported the advocacy efforts of the National Ataxia Foundation (NAF). Like pulmonary fibrosis, some forms of ataxia are rare diseases. One of them, spinocerebellar ataxia type 3, also known as Machado-Joseph disease, took the lives of three…
Individuals with idiopathic pulmonary fibrosis (IPF) who experience unintended weight loss are at significantly higher risks of being admitted to the hospital or dying within one year, a Danish study reported. Specifically, IPF patients with unintended weight loss were found to have a nearly 30 times higher risk of…
Nicole Zuraitis is set to perform “Just Like That,” the 2023 Grammy Awards’ Song of the Year, at the 13th edition of “Broadway Belts for PFF!” — a glam affair that’s become the Pulmonary Fibrosis Foundation’s single-largest annual fundraiser — on March 6. Written by Bonnie Raitt, the song…
As Rare Disease Day approaches on Feb. 28, I’m trying to narrow the focus of my advocacy efforts. I never imagined I’d become an advocate and grow to love so many people living with rare diseases. But that all changed in April 2016, when I was diagnosed with idiopathic…
In the 1939 Frank Capra film “Mr. Smith Goes to Washington,” a naive young man played by Jimmy Stewart is appointed to fill a vacant seat in the U.S. Senate. He was determined to make a difference and perhaps change the world. Faced with the challenges of the political arena,…
The California Institute for Regenerative Medicine (CIRM) has awarded Rubedo Life Sciences $1.45 million to develop and study a potentially disease-modifying treatment for idiopathic pulmonary fibrosis (IPF) that targets senescent lung stem cells. The funding will enable the biopharmaceutical company to characterize senescent cells —…
The first patient has been dosed in a Phase 2 clinical trial of bersiporocin, Daewoong Pharmaceutical’s treatment candidate for idiopathic pulmonary fibrosis (IPF). Full patient dosing and initial data from the study are anticipated by 2024, according to Daewoong. “Daewoong Pharmaceutical has set the significant first step to the…
