Living with Cystic Fibrosis

04/20/2026

04/20/2026

Watch Now: A Laughing Matter? Stand-Up Comedy & CF 🤣

Finding humor in difficult times can be a powerful coping tool. For people living with CF, it can bring levity to experiences that are often confusing, frustrating, and painful. In this podcast, Mimi Salonen, an adult with CF, shares how pursuing stand-up comedy became both a creative outlet and a way to fulfill a lifelong dream, all while raising awareness about CF and making audiences laugh along the way.

👀 Watch on Youtube: https://youtu.be/Db2fuN06mmU
👀 Watch on PodBean: https://www.podbean.com/pw/pbblog-6x5ju-17b502

Made possible with funding from Viatris, Vertex Pharmaceuticals, AbbVie, Genentech, Gilead Sciences, and ReCode Therapeutics.

04/20/2026

04/20/2026

Sibling dynamics in cystic fibrosis households—explained: https://bit.ly/3H1RvmM

04/20/2026

Did you know...

One organ donor can save up to 8 lives and enhance many more through tissue donation 💙

Organs that can be donated include the heart, lungs, liver, kidneys, pancreas, and intestines. Each donation can help someone waiting for a second chance at life.

For many in the cystic fibrosis community, organ donation makes life saving transplants possible.

💚 Learn more and consider registering as a donor

04/20/2026

How exciting is this?? 😲

A nanobody is able to correct the functionality of the defective CFTR protein in people with CF caused by the F508del mutation.

03/22/2026

In a bar, a poet meets the man behind the drug that saved his life — discovering how science, faith and chance created a future thought impossible.

03/22/2026

Take a look: https://bit.ly/3NwRI4t

Life with CF brings a mix of routines, challenges, and moments of strength that shape daily life in meaningful ways.

This piece offers a grounded look at what it means to navigate symptoms, treatments, and emotions while still finding space for joy, connection, and personal growth.

03/22/2026

Over the years, Sheri Boyd learned — sometimes the hard way — that what employers often expect from their employees isn’t always compatible when you're living with a chronic illness.

“For years, I tried to be 'the good employee with CF.' The agreeable one. The low-maintenance one. The one who didn’t want to be that person — the one whose health required accommodations, conversations, or pauses. I said ‘I’m fine’ more times than I can count, mostly because it was easier than explaining that “fine” is a relative word when you live with a chronic illness.

In my career, I learned quickly that many workplaces love dedication. They celebrate hustle. They reward showing up early, staying late, and pushing through. But dedication becomes complicated when your body doesn’t cooperate on command, and hustle looks different when survival is already a full-time job.”

03/22/2026

For people living with cystic fibrosis, affordable health care is critical — and it can determine whether someone can keep up with the daily, lifelong care CF requires.

Cystic fibrosis is a complex disease. Managing it often means working with CF care teams, respiratory therapies, nutrition support, mental health services, and specialty medications, like CFTR modulators, and so much more. Comprehensive coverage isn’t a “nice to have.” It’s essential.

Even with insurance, costs can be overwhelming. Many people in the CF community face rising premiums and extremely high out-of-pocket costs, which can lead to impossible trade-offs that may result in irreversible health decline.

We’re asking Congress to help address some of the affordability issues facing the CF community. Here is what they can do, right now:

– Pass the HELP Copays Act — so insurers count third-party assistance toward deductibles/out-of-pocket max and address the gap in current law that allows some plans to classify specialty medications as ‘non-essential’ and shifting costs to patients.

– Protect comprehensive coverage by opposing proposals that push patients into high-deductible plans paired with Health Savings Accounts as the primary affordability solution for people with chronic, lifelong needs.

People with cystic fibrosis need affordable health care, and we won’t stop educating policymakers on the needs of the CF community.