Photo courtesy of Steve Dragoo Day 11 of 30 This is Steve Dragoo’s story: I was initially diagnosed with interstitial lung disease in Manila in October 2016 and just thought I had walking pneumonia. I had never heard this term before and such cases are quite rare in…
Participation in clinical trials exposes rare disease patients to financial, physical, and emotional pressures, according to the results of a patient focus group series. “Rare disease trial participants are running an endurance race they are highly motivated to complete, but these incremental burdens negatively impact their ability or willingness to…
Photo courtesy of Nicholas Sloop Day 10 of 30 This is Nicholas Sloop’s story: I’ve always had a pretty active lifestyle, which I attribute to my dad. Growing up with my dad as an elementary school PE teacher — one who coached many different sports during his teaching career…
A trio of global companies is teaming up to develop an inhaled dry powder formulation of SF2523, an investigational small molecule that blocks the activity of two fibrosis-driving proteins that may help block tumor growth and ease lung scarring and inflammation. SF2523 is being developed as a treatment for…
Photo courtesy of Linda M. Day 9 of 30 This is Linda M.’s story: We have been watching our friends, Kevin and Dana Olson, go through their PF journey for the past five years. Kevin was diagnosed with PF in 2014 and received a double lung transplant…
Photo courtesy of Latoya Hawkins Day 8 of 30 This is Latoya Hawkins’ story: After years of a cough that just would not go away, I was diagnosed with pulmonary fibrosis in December 2019. I was prescribed oxygen at that time, which made my disability more visible. Although I…
In preclinical studies, PRS-220, Pieris Pharmaceuticals’ experimental inhaled therapy for idiopathic pulmonary fibrosis (IPF), showed stronger lung tissue penetration and anti-scarring effects than pamrevlumab — an into-the-vein, mechanistically similar IPF therapy currently being tested in a Phase 3 clinical trial. These promising findings, which support Pieris’…
Photo courtesy of Mary Spilman Day 7 of 30 This is Mary Spilman’s story: I was on a Girl Scout camping trip with my granddaughter in September 2016 when I caught a cold that turned into pneumonia. The X-ray showed a spot on my lung so I had a…
I am finally on the road to a better understanding of my disease, lymphocytic interstitial pneumonia (LIP), and the course it’s taken throughout my life. In my previous column, I mentioned that I would soon have my second visit with my new pulmonologist. During this visit, I finally got…
A new service, Bionews Clinical is seeking to bring more patients into relevant clinical trials by helping all involved — scientists, pharmaceutical companies, people with diseases — regard these studies as part of continuing care. “Today what happens is that the conversation about patients participating in a clinical trial is…
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