BioNews Staff, writers and editors —

Nominations are now open for the worldwide 2022 Black Pearl Awards from Eurordis-Rare Diseases Europe. The 12 award categories recognize individual advocates, policy makers, researchers, organizations, and companies who work to make a difference for the global rare disease community. The deadline for nominations is Sept. 10…

Photo courtesy of Bailey Anne Vincent Day 31 of 31 This is Kage LaBarbera’s story: My mom has cystic fibrosis. The disease basically makes my mom’s lungs fill to the brim with slimy mucus, not unlike the stuff in Disney’s “The Princess and…

Photo courtesy of Ric Sherman Day 30 of 31 This is Ric Sherman’s story: Mutual friends had been trying to set us up for over a year. They even put together a PowerPoint presentation about why we would be a good match with very similar…

Photo courtesy of Samantha Barrett Day 29 of 31 This is Samantha Barrett’s story: I didn’t know anything about cystic fibrosis until I met Bailey. One of the best decisions I’ve ever made was auditioning for her dance company, Company 360. Over the past…

Photo courtesy of Jonathan Wyman Day 28 of 31 This is Jonathan Wyman’s story: A decade ago, I lost the excuse to complain about pain or anguish. Not that I would talk openly about my own suffering anyway, but still… That is…

Photo courtesy of Bonnie Ong Day 27 of 31 This is Bonnie Ong’s story: My friends with cystic fibrosis are now in their 30s. Something that eluded so many for so long is now considered the “average life expectancy” for people with CF. But I…

Photo courtesy of Amy Hamilton Day 26 of 31 This is Allison Steeves’ story: When families grow, the circle of love is expanded and, at the same time, the circle of worry; the two go hand in hand. Spring 2020 began with the exciting announcement…

Photo courtesy of Luisa Palazola Day 25 of 31 This is Luisa Palazola’s story: Three months before I started Trikafta, I went to Colombia with my FEV1 at 62%. Toward the end of my trip, I coughed up blood on the side of…

Photo courtesy of Della Anne Day 24 of 31 This is Della Anne’s story: Ports are a common accessory if you have cystic fibrosis. After most of the veins in my arms had been used up from Picc (peripherally inserted central catheter) lines, my doctor…

Photo courtesy of Chase Nichols Day 23 of 31 This is Chase Nichols’ story: Insecurity. Not quite the word that most people who look at me would associate with me. But they would be wrong, at least for the most part. Growing…