CF modulator drugs changes are a game changer for people living with cystic fibrosis.
Katie O’Grady’s story is a powerful reflection of how dramatically life with cystic fibrosis has changed in the era of CF modulators, and what becomes possible when hope replaces survival mode.
A runner, speaker, and cystic fibrosis advocate in Boston, Katie redefined what it means to live with CF. Katie inspires us by talked about her shift in mindset and how it changed everything: she stopped thinking of herself as “a CF patient who runs” and began identifying as “a runner who happens to have CF.” That subtle but profound change transformed not only the way she trained, but the way she cared for herself, viewed her future, and moved through the world.
For much of her life, Katie lived the reality many people with CF know too well — moving from infection to infection, never fully certain what the next year, or even the next season, might bring. At 18, she battled a devastating case of pneumonia that forced her to confront the fragility of her health. But in 2019, everything changed with the arrival of Trikafta. For the first time, Katie could imagine a future without immediately attaching fear or limitations to it.
She speaks candidly about what it means to rebuild trust in your body after years of illness, and how running became far more than exercise. It became freedom, therapy, identity, and proof that her diagnosis did not get to define the boundaries of her life. Katie opens up about taking the longest break from running she’d ever experienced, wondering if she would ever return, and discovering that what she missed most wasn’t competition — it was the clarity, peace, and sense of self she found while moving.
Katie’s journey also highlights the larger transformation happening within the CF community as modulator therapies allow many people to dream bigger, plan further ahead, and pursue goals once thought impossible. Her story is not about pretending cystic fibrosis is easy. It is about resilience, adaptation, and choosing to live expansively despite uncertainty.
Recognized as a 2023 American Thoracic Society Patient Speaker, Katie also serves as a Cystic Fibrosis FoundationDisney Marathon Team Coach from 2024–2026. Her advocacy and writing have been featured in the CF Foundation Blog, CF Warrior Project Vol. 2, and ATS Patient Voices 12th Edition.
This episode is a moving conversation about identity, resilience, healing, movement, and the extraordinary impact of medical breakthroughs that are helping people with cystic fibrosis imagine lives far beyond survival.
Listen to the Living with cystic fibrosis or watch at YouTube
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