Living with Cystic Fibrosis

10/19/2026

Before open enrollment begins, ask yourself: What do I need my health insurance to do for me next year?

Maybe it's keeping a specific doctor in-network. Maybe it's affording a medication that you depend on every day. Maybe it's not wanting to be caught off guard by an expensive medical bill.

Whatever it is, Compass case managers are trained to help people with cystic fibrosis and their families think through exactly these kinds of questions and look for the best plans to meet your needs.

10/19/2026

Cystic fibrosis is more than just a lung disease. As people with CF live longer lives, liver health is becoming an increasingly important part of the conversation. Nicole Reynolds, an adult with CF, shares how CF-related liver disease has impacted her life.

"I wish people understood how much more thought goes into my everyday decisions now that I must factor in CF-related liver disease and how that might look for me. It is a lot to deal with on top of everything else I deal with when it comes to my CF care. I only ask that people show some patience and grace when I exhibit certain symptoms or issues that are caused by the CF-related liver disease."

10/19/2026

Gene editing and other genetic therapies are opening new possibilities for the future of cystic fibrosis care. On the CF Community Blog, Simmons Purdy shares why this research matters.

"I think my generation is paving the way for the next generation of people with CF with a lot of firsts. We grew up being told that we couldn’t expect to be healthy enough to have jobs or families, or live to retirement. But here we are doing all of those things. I am thrilled that with continued research and medical advancements the next generation of people with CF will not be defined by their limitations but instead by their abilities."

10/19/2026

When you live with cystic fibrosis, it can be hard to tell whether a symptom is temporary or something more serious.

Columnist William Ryan has learned that keeping his anxiety in check is a key part of managing his health. His column shares how he stays steady and makes clearer decisions about his care.

Link in the first comment.

09/16/2026

https://www.pbs.org/wgbh/nova/video/the-battle-to-breathe/

If you wanna know about living life with CF, check out this special that is on PBS tonight at 9 o’clock or you can watch it online.

Once a death sentence, cystic fibrosis now has a life-saving treatment. Follow the decades-long scientific quest, fueled by desperate parents, that led to this revolutionary breakthrough.

07/01/2026

07/01/2026

We are providing up to $13 million in additional funds to SpliSense to help test a potential inhaled genetic therapy for people with cystic fibrosis who have the splicing mutation 3849+10Kb C-to-T.

The treatment will be studied in people with this mutation who are already taking Trikafta or Alyftrek to see whether adding this potential treatment could help those therapies work better.

This research is part of the Foundation’s ongoing work to expand treatment options for people with rare mutations.

07/01/2026

⛳ Join us for the inaugural Par for the Cause!

Gather your family, friends, and colleagues on Sunday, September 27th at Topgolf for an afternoon of friendly competition, great company, and giving back.

Every swing helps fund life-changing breathers for individuals and families living with cystic fibrosis, giving them the chance to step away from daily challenges and focus on making memories together.

Sponsorship opportunities are available!

📍 Topgolf King of Prussia
📅 Sunday, September 27
🕐 1:00 PM
Register Here: https://givebutter.com/2026-par-for-the-cause

Every Shot Makes a Difference.

07/01/2026

07/01/2026

The Breath of Life Gala you’ve known and loved is taking center stage in an exciting new way. ✨

Introducing Breath of Life on Broadway—a distinctly New York experience featuring unforgettable performances that bring our mission to life.

Join the Greater New York Chapter on Thursday, November 19, 2026, at the iconic Gotham Hall for an elegant evening of cocktails, dinner, and inspiration. You won’t want to miss this show-stopping night.

https://events.cff.org/NYCGala