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3 weeks ago | 
cysticfibrosisnewstoday.com | Patricia Inacio |Bailey Anne Vincent |Andrea Lobo |Marisa Wexler
The Cystic Fibrosis Foundation will invest up to $2.3 million for a company to develop a breath test designed to detect Pseudomonas aeruginosa and to monitor chronic infections in people with cystic fibrosis (CF). P. aeruginosa bacteria are a major cause of lung disease in people with CF. Although it doesn’t typically cause illness in healthy people, the dense, sticky mucus in CF lungs creates an ideal environment for this bacteria to thrive and trigger serious infections.
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1 month ago | 
cysticfibrosisnewstoday.com | Marisa Wexler |Bailey Anne Vincent |Lara Govendo |Katherine Poinsatte
A European Medicines Agency (EMA) committee recommended that the label for Kaftrio be expanded to cover treatment for people with cystic fibrosis (CF) caused by a wider array of mutations, Kaftrio’s developer Vertex Pharmaceuticals said. The Committee for Medicinal Products for Human Use (CHMP) opinion will be reviewed by the European Commission, which has final say over medication approvals in the European Union.
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2 months ago | 
cysticfibrosisnewstoday.com | Marisa Wexler |Bailey Anne Vincent |Andrea Lobo
Boehringer Ingelheim has launched a Phase 1/2 clinical trial of BI 3720931, an inhaled gene therapy designed to treat cystic fibrosis (CF). The first-in-human trial, dubbed LENTICLAIR 1 (NCT06515002), is expected to enroll about 36 adults with CF who are not eligible for treatment with CFTR modulators. In the study’s Phase 1 part, participants will be given BI 3720931 at one of three ascending doses with a main goal of assessing safety.
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2 months ago | 
cysticfibrosisnewstoday.com | Bailey Anne Vincent |Steve Bryson |Marta C. Figueiredo
It’s extremely expensive to have cystic fibrosis (CF), as I do. It’s extremely expensive to have any chronic illness. It’s extremely expensive to be sick. I’m beginning to wonder if the system has been accidentally rigged against those of us who are ill, no matter what we do. What is “the system,” you ask? That’s worth knowing, as I feel that many of us who deal with ongoing or progressive sickness use these two words more than we realize.
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Jan 16, 2025 | 
cysticfibrosisnewstoday.com | Katherine Poinsatte |Wendy Henderson |Bailey Anne Vincent |Andrea Lobo
Claire’s Place Foundation, a nonprofit supporting children and families affected by cystic fibrosis (CF), has launched a CF Ambassador & Advisory program — and is now seeking to grow the new initiative. By involving advocates and people living with CF in the foundation’s mission, and amplifying patient voices within the community, the Ambassador & Advisory program aims to empower all those affected by CF, according to a press release from the nonprofit.
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Jan 15, 2025 | 
cysticfibrosisnewstoday.com | Bailey Anne Vincent |Patricia Inacio |Lindsey Shapiro |William Ryan
I think the “if you just” culture is hurting sick people. Have you heard sentences that start with “if you just”? They often end by oversimplifying an issue that’s likely not that simple. I’m sick of oversimplifying health. The “if you just” culture is a bit like when someone comments on a cancer patient’s post and says, “Have you tried green juice yet?” The intent is good. The hope to help is present. But when we boil down any ailment to a single, simple, and popular “solution,” we fall flat.
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Dec 4, 2024 | 
cysticfibrosisnewstoday.com | Bailey Anne Vincent |Andrea Lobo |Margarida Maia |Marisa Wexler
“How am I going to get old like this?”I was watching the film “Thelma” with my husband last night, and five minutes into the opener, I found myself crying. I’m not a collector of antique things, but I am a longtime appreciator of vintage personalities. I love anything and everything that shows anyone over the age of 70 defying standards, fighting ageism, or even just being their true selves.
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Nov 27, 2024 | 
cysticfibrosisnewstoday.com | Bailey Anne Vincent |Katherine Poinsatte |Lara Govendo |Margarida Maia
Note: This column describes the author’s own experiences with steroid injections. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. Going in for injections is not that hot. (Photo by Bailey Anne Vincent) “Why do I do this every time?” I asked my partner a day after receiving multiple steroid injections underneath the hardware in my lower back.
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Nov 20, 2024 | 
cysticfibrosisnewstoday.com | Bailey Anne Vincent |Lindsey Shapiro |Lara Govendo |Steve Bryson
During my three-year hiatus from my column, I endured the following: A cervical spine disk replacement, a sacroiliac (SI) joint fusion, a hip fracture, a second SI joint fusion (repair of the faulty first), a lower leg nerve decompression surgery, a surgery to replace a disk in my lumbar spine and apply some screws and bolts, and another surgery two days later to put a cage around part of my lumbar spine and attempt the final SI fusion (on both sides this time) after all the other failed...
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Nov 18, 2024 | 
cysticfibrosisnewstoday.com | Jennifer Bleecher |Lara Govendo |Brad Dell |Bailey Anne Vincent
They say that the older you get, the faster time passes. At 53 years old, I completely agree. As I look back at the columns I’ve written in the past, I can’t believe we’re approaching the holiday season again. Don’t get me wrong — I’m thankful for it. I’m also extremely thankful for my current stable health so that I can enjoy another holiday season. I’m thankful that my family is healthy and that we have the good fortune to easily gather to share a meal and our time.
