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1 week ago | 
cysticfibrosisnewstoday.com | Jennifer Bleecher |Andrea Lobo |Lara Govendo
I recently agreed to facilitate one of the Cystic Fibrosis Foundation’s CF Circles, which are virtual small-group discussions about a specific topic. The focus of this particular gathering was “Living with cystic fibrosis (CF) over 40.”After my double-lung transplant in 2020, I decided to take a break from many things CF on social media.
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3 weeks ago | 
cysticfibrosisnewstoday.com | Andrea Lobo |Marisa Wexler |Lara Govendo
Researchers at the University of California, Los Angeles (UCLA) are developing a gene-editing therapy — designed to be delivered as a one-time inhalable treatment — that aims to correct the underlying mutations that cause cystic fibrosis (CF). The team is using tiny fat-based particles to deliver the gene-editing machinery to lung stem cells, where, they believe, gene correction could be permanent.
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3 weeks ago | 
cysticfibrosisnewstoday.com | Jennifer Bleecher |Marisa Wexler |Lara Govendo
In a private Facebook group for adults living with cystic fibrosis (CF), a post jumped out at me asking if anyone had gone through a divorce after their double-lung transplant. The post instantly caught my attention because that’s my current situation. What disturbed me was the number of responses saying, “Yes, me.”After being with someone for 17 years and seeing many ups and downs of adulthood and CF life together, four years after the transplant, my marriage is over.
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4 weeks ago | 
cysticfibrosisnewstoday.com | Lara Govendo |Margarida Maia |Kristin Entler |Brad Dell
I’m so tired of some people’s responses to my suffering. I understand that some people might not get what I’m going through if they don’t have personal experience living with chronic illness. But I’d think they wouldn’t voice an opinion on something they know nothing about. Unfortunately, that’s not the case. People have said things to me that are hurtful and frustrating.
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1 month ago | 
cysticfibrosisnewstoday.com | Brad Dell |Lara Govendo |William Ryan |Jennifer Bleecher
As a child I was a kicker, the type no nurse wants to be near when wielding needles and throat swabs. Eventually I’d relax my shrieking when Mom or Dad held my hand and called me brave. The nurses were then more warmly received. To be safe, they came bearing diplomatic lollipops, stickers, and another “You’re so brave.”There comes a time when the chronically ill child learns that such rewards are designed to shut them up and soften the next meltdown.
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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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1 month ago | 
cysticfibrosisnewstoday.com | Lara Govendo |Margarida Maia |Steve Bryson |Lindsey Shapiro
Several pieces of my life puzzle happen to be rare. First thing’s first: I have cystic fibrosis (CF), a rare disease that affects about in the United States. (The U.S. Food and Drug Administration considers a disease rare if it affects .) More significantly, I’m in the 10% of the CF population who don’t qualify for modulators because of my rare mutations. That means the cutting-edge miracle drugs don’t apply to me.
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2 months ago | 
cysticfibrosisnewstoday.com | Katherine Poinsatte |Lara Govendo |Andrea Lobo |Steve Bryson
Cystic fibrosis (CF) patients saw improved lung function after one year of treatment with Kaftrio, sold as Trikafta in the U.S., a study found. The benefits were seen regardless of age, disease severity, or prior CFTR modulator treatment. “Using high-resolution data from a nationwide real-world setting, our study documents the impact of [Kaftrio] on lung function across subgroups based on age, disease severity and treatment history,” the researchers wrote.
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Jan 21, 2025 | 
cysticfibrosisnewstoday.com | Jennifer Chamberlain |Andrea Lobo |Patricia Inacio |Lara Govendo
“I hate my treatments. I don’t want to have cystic fibrosis anymore.”That statement came during a recent night with my daughter, Claire, who has the disease. I was trying to persuade her to complete her breathing treatment, but I was facing resistance. As parents of a child with cystic fibrosis (CF), we don’t have a lot of choice about such treatments. They’re a necessity. But how do I express their importance to a just-turned-6-year-old? I feel responsible for how Claire views her condition.
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Jan 14, 2025 | 
cysticfibrosisnewstoday.com | Margarida Maia |Lara Govendo |Marisa Wexler |Steve Bryson
After one year of treatment with Kaftrio, a triple combination of elexacaftor, tezacaftor, and ivacaftor marketed as Trikafta in the U.S., the number of harmful bacteria growing in the lungs of people with cystic fibrosis (CF) declined significantly, a French study reports.
