Did you ever play Pac-Man? The bright yellow Pac-Man would wander through the maze, happily munching down the blinking dots. That’s how I feel about my energy levels as a pulmonary fibrosis advocate. I pursue advocacy with a passion fed by all the opportunities that arise — my own…
We Can All Play an Important Role in Rare Disease Advocacy
It’s been awhile since I’ve really felt defeated, but life has a way of reminding us sometimes of how truly vulnerable we are. Dealing with a rare illness like pulmonary fibrosis can complicate things even more. The last two months have been tough for my family and me. We’ve…
Following my diagnosis of idiopathic pulmonary fibrosis (IPF) in January 2017, I knew the disease would diminish my quality of life. For about three years, my IPF progression stair-stepped — that is, I’d remain stable for a period, and then I’d experience a decline in lung function and…
The Pulmonary Fibrosis Foundation (PFF) is hosting its sixth annual PFF Walk fundraiser with virtual and in-person events over the next few months to raise funds and awareness in support of people living with pulmonary fibrosis. “We encourage everyone to join us in celebrating these individuals and helping…
Nonprofits, scientists, governmental organizations, and the rare disease drug development industry have long cited 7,000 as the average number of rare diseases in the world. But a new analysis shows there are as many as 10,867 rare diseases globally. And that…
It took 26 months, but I finally got COVID-19. In that time, I’ve felt many strong emotions about the pandemic and its effects. Every part of life has been touched by this disease and the wildly varied responses to it, both across the globe and within our interpersonal…
The experimental oral therapy PLN-74809 was overall well tolerated in people with idiopathic pulmonary fibrosis (IPF) participating in the Phase 2a INTEGRIS-IPF trial, according to new data announced by its developer, Pliant Therapeutics. The data also indicated that PLN-74809 was able to slow lung function decline when given…
Aramchol, an investigational therapy for idiopathic pulmonary fibrosis (IPF), demonstrated significant anti-fibrotic effects in a mouse model. The therapy, developed by Galmed Pharmaceuticals, is currently being evaluated in a Phase 3 clinical trial in people with nonalcoholic steatohepatitis, or NASH, a type of fatty liver disease characterized by…
Idiopathic pulmonary fibrosis (IPF) is a cruel and greedy chronic illness. I’ve had to accept this, albeit begrudgingly, since being diagnosed with this life-threatening and debilitating lung disease in 2016. Just how cruel and greedy IPF is has become more apparent in the last couple of years as…
Summer is here in the Northern Hemisphere. Where I live, in the mid-Atlantic region of the United States, there are three key indicators that summer has arrived: heat, humidity, and thunderstorms. It’s also a popular time for vacations and getaways. My wife, Susan, and I have always loved to travel,…
