Addressing Stares from Others

I understand that it is uncommon to see a young adult wearing supplemental oxygen and using a wheelchair due to fatigue. It might spark a passerby’s curiosity about what has made this young person’s lungs so sick that they can’t breathe efficiently. I understand curiosity, but as…

Samumed and United Therapeutics announced an exclusive license agreement for North American rights to Samumed’s investigational therapy SM04646 to treat idiopathic pulmonary fibrosis (IPF). Under the agreement, United Therapeutics will pay Samumed $10 million up-front, plus up to $340 million in developmental milestones in addition to other…

Treating one’s self with tender care is especially important to pulmonary fibrosis patients and their families. Medical tests, clinic visits, long-term illness management, and a shortened lifespan are difficult, unpleasant, and stressful experiences. We continue to grieve and adjust as our lungs worsen. It is important to respond…

Corbus Pharmaceuticals has acquired from Jenrin Discovery more than 600 compounds designed to target the endocannabinoid system, including CRB-4001 for the treatment of fibrotic diseases affecting the lungs, liver, heart, and kidney. The endocannabinoid system is associated with the resolution (or shutting off) of the inflammatory response, which…

I hope I never take my ability to travel for granted. The world is a beautiful place, and despite my diagnosis of idiopathic pulmonary fibrosis (IPF), I intend to see as much of it as possible while I still can. Recently, I spent time on the east coast…

Roivant Sciences has launched a new company whose focus is developing potential treatments for serious respiratory diseases. Named Respivant Sciences, it will begin by advancing RVT-1601 as an investigative therapy for chronic cough in patients with idiopathic pulmonary fibrosis (IPF). RVT-1601, formerly known as PA101, is a novel formulation…

More than 700 medical experts, pharmaceutical executives, patient advocates, and others are expected to converge on Washington, D.C., next month for the 2018 NORD Rare Diseases & Orphan Products Breakthrough Summit. The Oct. 15-16 event, sponsored by the National Organization for Rare Diseases (NORD), takes place at the…

Long-term treatment with Ofev (nintedanib) can safely slow disease progression in people with idiopathic pulmonary fibrosis (IPF), new four-year data from INPULSIS-ON, an open-label Phase 3 extension trial, show. The findings were reported in “Long-term safety and tolerability of nintedanib in patients with idiopathic pulmonary fibrosis: results from…

Treatment of idiopathic pulmonary fibrosis (IPF) with Esbriet (pirfenidone) leads to stable lung function over two years, according to a real-world study. The data matches previous results from Phase 3 trials. The research, “Functional decline over time in patients with IPF treated with pirfenidone: the…

I am learning to hold onto things loosely. To me, holding things loosely as a PF patient means being active in the pursuit of my health, taking care of things I need to, and letting go of things that are out of my control. I’m shifting my…