Living with cystic fibrosis: the challenges and triumphs along the way. Live-Breathe-Inspire
Living With Cystic Fibrosis
Claim This Podcastby Laura Bonnell
4.8(32 reviews)
202 episodes
Updated Daily
Accepts GuestsHas SponsorsLocation 🇺🇸
79
Podcast Authority
BetaGoodBased on show quality, social media presence, reviews, charts, and more
Quality92
Social0
YouTube82
Engagement82
Podcast Overview
Living with cystic fibrosis: the challenges and triumphs along the way. Live-Breathe-Inspire
Language
🇺🇲
Publishing Since
2/1/2019
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79
Podcast Authority
BetaGoodBased on show quality, social media presence, reviews, charts, and more
Quality92
Social0
YouTube82
Engagement82
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8
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excellent
Episode Length
40 minutes
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Every 14 days
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Recent Episodes
June 22, 2026
Running changed and saved her life - Katie O'Grady inspires
<p>"Many people have their own thing that lights them on fire, for me, it's running" say Katie O'Grady. </p> <p>CF modulator drugs changes are a game changer for people living with cystic fibrosis.</p> <p>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.</p> <p>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.</p> <p>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.</p> <p>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.</p> <p>To watch on YouTube: <a href="https://www.youtube.com/watch?v=zzdQraUAPfc" rel="noopener noreferrer">https://www.youtube.com/watch?v=zzdQraUAPfc</a></p> <p><p>Like, subscribe, and comment on our podcasts!</p><p>Please consider making a donation: <a href="https://thebonnellfoundation.org/donate/">https://thebonnellfoundation.org/donate/</a></p><p>The Bonnell Foundation website:<a href="https://thebonnellfoundation.org/">https://thebonnellfoundation.org</a></p><p>Email us at: <a href="thebonnellfoundation@gmail.com ">thebonnellfoundation@gmail.com </a></p><p>Watch our podcasts on YouTube: <a href="https://www.youtube.com/@laurabonnell1136/featured">https://www.youtube.com/@laurabonnell1136/featured</a></p><p>New: Shop our merchandise! <a href="https://thebonnellfoundation.org/product-shop/" target="_blank">https://thebonnellfoundation.org/product-shop/</a></p><p><strong>Thanks to our sponsors:</strong></p><p>Vertex: <a href="https://www.vrtx.com">https://www.vrtx.com</a></p><p>Viatris: <a href="https://www.viatris.com/en">https://www.viatris.com/en</a></p><p>Read us on Substack: <a href="https://substack.com/@lstb?utm_campaign=profile&utm_medium=profile-page">https://substack.com/@lstb?utm_campaign=profile&utm_medium=profile-page</a></p><p>Watch our trailer of Embracing Egypt: <a href="https://youtu.be/RYjlB25Cr9Y">https://youtu.be/RYjlB25Cr9Y</a></p></p>
June 15, 2026
Final Breath, First New Life: Jillian’s Transplant Journey
<p>“Take in your final breath before your first new one.” Those were the words Jillian heard before her double lung transplant—words that would mark the end of one life chapter and the beginning of another.</p> <p>Jillian is 34 years old, living with cystic fibrosis, and a double lung transplant recipient. Her story is one of resilience, loss, hope, and purpose. From being diagnosed at birth to navigating adulthood, Jillian has faced more than most, but she continues to show up for her life and for others in the cystic fibrosis community.</p> <p>Jillian shares what it was like growing up with CF, supported by family and shaped by early connections within the community. She reflects on how advocates like Emily Schaller and the Rock CF Foundation influenced her outlook and helped her feel less alone.</p> <p>We also talk about her college years, what it meant to pursue independence while managing a complex disease, and how life shifted as her health declined into end-stage lung failure. Jillian walks us through the transplant process, not just medically, but emotionally—the fear, the uncertainty, and the strength it takes to keep going.</p> <p>One of the most profound parts of Jillian’s story is the loss of her twin brother. She opens up about that grief and how it continues to shape her perspective, her resilience, and her compassion for others.</p> <p>Throughout it all, Jillian emphasizes the importance of support systems and mental health—especially during the transplant journey. No one goes through something like this alone, and her story is a reminder of how critical connection and care truly are.</p> <p>Today, Jillian looks toward the future with hope. She shares her dreams of building a family, continuing her advocacy work, and expanding the impact of the nonprofit she founded, Jillian’s Jay Walkers Organization.</p> <p>Her story is not just about survival—it’s about living with intention, honoring loss, and creating something meaningful from it all. 💜</p> <p>What Jillian hopes to do as her Foundation grows:</p> <p>2026 program updates:</p> <p>Nutritional Support- grocery assistance, food journal (In the future I would like to partner with a RD and/or Nutritionist to help provide personalized recommendations, meal planning, recipes, etc.)</p> <p>Home Air Quality Support- air filter units and humidifier devices</p> <p>Peer Mentorship- 1:1 coaching to help with weight management and treatment adherence </p> <p> Hospital Comfort Blankets- handmade by volunteers for CF children in the hospital </p> <p>Contact Jillian here: <a rel="noopener noreferrer">Email: Jill@jilliansjaywalkers.org</a></p> <p><p>Like, subscribe, and comment on our podcasts!</p><p>Please consider making a donation: <a href="https://thebonnellfoundation.org/donate/">https://thebonnellfoundation.org/donate/</a></p><p>The Bonnell Foundation website:<a href="https://thebonnellfoundation.org/">https://thebonnellfoundation.org</a></p><p>Email us at: <a href="thebonnellfoundation@gmail.com ">thebonnellfoundation@gmail.com </a></p><p>Watch our podcasts on YouTube: <a href="https://www.youtube.com/@laurabonnell1136/featured">https://www.youtube.com/@laurabonnell1136/featured</a></p><p>New: Shop our merchandise! <a href="https://thebonnellfoundation.org/product-shop/" target="_blank">https://thebonnellfoundation.org/product-shop/</a></p><p><strong>Thanks to our sponsors:</strong></p><p>Vertex: <a href="https://www.vrtx.com">https://www.vrtx.com</a></p><p>Viatris: <a href="https://www.viatris.com/en">https://www.viatris.com/en</a></p><p>Read us on Substack: <a href="https://substack.com/@lstb?utm_campaign=profile&utm_medium=profile-page">https://substack.com/@lstb?utm_campaign=profile&utm_medium=profile-page</a></p><p>Watch our trailer of Embracing Egypt: <a href="https://youtu.be/RYjlB25Cr9Y">https://youtu.be/RYjlB25Cr9Y</a></p></p>
June 8, 2026
Rare, But Not Invisible: Chrisy and Dr. Kingzett talk advocacy.
<p>Chrisy and Dr. Kingzett, two women I met when we were all trying to raise our rare voices a little louder.</p> <p>Christine “Chrisy” Klavitter and Dr. Kristen Kingzett are both rare disease advocates, but more importantly, they are people living this reality every single day. Chrisy lives with Stiff Person Syndrome and Myositis. Kristen is an Internal Medicine physician and an ultra-rare cancer survivor.</p> <p>Together, we talk about what life with rare disease actually looks like—beyond the statistics. From delayed diagnoses (which can take years, even decades) to the emotional and physical toll of navigating a fragmented healthcare system, this conversation is honest, eye-opening, and necessary.</p> <p>More than 30 million people in the U.S. are living with a rare disease—defined as affecting fewer than 200,000 people. Yet despite those numbers, patients are still too often misunderstood, misdiagnosed, or left to navigate care on their own.</p> <p>Chrisy and Kristen share what an average day can look like, the full-time job of managing health (or caring for someone who is), and what happens when patients have to push back—even redirect—the so-called experts.</p> <p>We also dig into the bigger questions:</p> <ul> <li>Why does diagnosis still take so long—and how do we fix it?</li> <li>What do providers, institutions, and policymakers still not understand?</li> <li>What do you say to someone who believes “there’s nothing I can do”?</li> <li>And where are we actually seeing progress in healthcare?</li> </ul> <p>What stands out most is this: patients are not passive participants in their care—they are often the ones holding it all together.</p> <p><strong>About my guests:</strong><br> Dr. Kristen Kingzett is an Internal Medicine physician, educator, and advocate who brings both professional expertise and lived experience, including Juvenile Idiopathic Arthritis, Common Variable Immune Deficiency, and an ultra-rare cancer. She serves on Michigan’s Rare Disease Advisory Council and Legislative Disability Caucus.</p> <p>Chrisy Klavitter is a healthcare policy and patient advocate, biologist, and recreation therapist. Living with Stiff Person Syndrome and Myositis, she works to bridge communication gaps between patients, providers, researchers, and policymakers to improve care for complex conditions.</p> <p><strong>The takeaway?</strong><br> Rare disease may be defined by numbers, but its impact is anything but small. And if we build a healthcare system that works for rare disease patients, we build one that works better for everyone.</p> <p><p>Like, subscribe, and comment on our podcasts!</p><p>Please consider making a donation: <a href="https://thebonnellfoundation.org/donate/">https://thebonnellfoundation.org/donate/</a></p><p>The Bonnell Foundation website:<a href="https://thebonnellfoundation.org/">https://thebonnellfoundation.org</a></p><p>Email us at: <a href="thebonnellfoundation@gmail.com ">thebonnellfoundation@gmail.com </a></p><p>Watch our podcasts on YouTube: <a href="https://www.youtube.com/@laurabonnell1136/featured">https://www.youtube.com/@laurabonnell1136/featured</a></p><p>New: Shop our merchandise! <a href="https://thebonnellfoundation.org/product-shop/" target="_blank">https://thebonnellfoundation.org/product-shop/</a></p><p><strong>Thanks to our sponsors:</strong></p><p>Vertex: <a href="https://www.vrtx.com">https://www.vrtx.com</a></p><p>Viatris: <a href="https://www.viatris.com/en">https://www.viatris.com/en</a></p><p>Read us on Substack: <a href="https://substack.com/@lstb?utm_campaign=profile&utm_medium=profile-page">https://substack.com/@lstb?utm_campaign=profile&utm_medium=profile-page</a></p><p>Watch our trailer of Embracing Egypt: <a href="https://youtu.be/RYjlB25Cr9Y">https://youtu.be/RYjlB25Cr9Y</a></p></p>
202 total episodes available
Recent guests on Living With Cystic Fibrosis
Guests from recent episodes — sign up to see every guest that has ever appeared on this show.
Mike Walters
Guest
Jason Vandiver
Guest
Dr MeiLan Han
Guest
Dr Gabriel Cohn
Guest
Michelle Glogovac
Guest
Lois Teicher
Guest
Natalie Wicks
Guest
Julie Weatherhead
Guest
Sharon Tischio
Guest
Cambria Whitaker
Guest
Theresa Dagget
Guest
Dorothy Strattford
Guest
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Frequently asked questions
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- What is Living With Cystic Fibrosis?
- How often does this podcast release new episodes?
This podcast updates daily.
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This podcast is available on 8 platforms including Apple Podcasts, Spotify, and more. You can also use the RSS feed directly.
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Yes, this podcast regularly features guests.
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