Living With Cystic Fibrosis

Laura Bonnell
  • 4.7 (20)
  • Documentary
  • Updated Weekly

Living with cystic fibrosis: the challenges and triumphs along the way. Live-Breathe-Inspire

  1. 9h ago

    CF Scholars: Stories of Determination

    Dreams and Determination: Meet four Inspiring students, Living with cystic fibrosis. One of the greatest joys of The Bonnell Foundation is helping young adults living with cystic fibrosis pursue their educational dreams. Every year, we award scholarships to students attending universities, trade schools, and community colleges. While these scholarships help with tuition and expenses, they also send an important message: we believe in these students and in the futures they are building. Living with cystic fibrosis often means balancing classes, careers, friendships, and family life alongside daily treatments, medications, and frequent medical appointments. For many families, the financial burden of CF can make the cost of higher education even more challenging. That's why our scholarship program is so meaningful. Each year, our top recipients receive $2,500 to help them continue their education and pursue their goals. The thank-you notes we receive from recipients are heartfelt reminders that a scholarship is about much more than money. It is about hope, opportunity, and encouragement. On this week's podcast, we are honored to introduce four remarkable scholarship recipients whose determination and resilience inspire us. Serena Scillia is a 20-year-old from Westerville, Ohio, attending Bowling Green State University. Serena is studying Early Childhood Education and hopes to become a teacher. When she's not focused on her studies, she enjoys coaching volleyball, reading, and spending time with her family and beloved dog. Serena's passion for helping others shines through in her career choice, and she's determined to make a difference in the lives of children. Jayla Jacobs has been living with cystic fibrosis since she was diagnosed at age five. Now 18 years old, she has already become a powerful advocate for the CF community. Jayla has spoken at multiple fundraising and awareness events, including the Cystic Fibrosis Foundation's Guys and Dolls Auction Gala, where she helped raise an incredible $2.2 million for CF research. This fall, she will begin studying English at North Carolina State University. Jayla loves outdoor adventures, drawing, and writing stories. She also understands the impact of CF on families, with two of her brothers living with the disease as well. Isabella Banaszynski is preparing for an exciting new chapter as she heads to Drexel University in Philadelphia this fall. An accomplished club wrestler and aspiring architect, Isabella has already demonstrated the discipline and determination needed to succeed in demanding environments. She plans to major in Architecture while continuing to pursue her athletic interests. Isabella's journey is proof that living with CF does not define what is possible. Ben Ferguson attends Taylor University and is majoring in Finance. Originally from Columbus, Indiana, Ben comes from a large family with four brothers and one sister. While he is the only member of his family living with cystic fibrosis, he has never allowed the disease to limit his ambitions. Ben is focused on building a successful future while managing the daily challenges that come with CF. These four young adults represent the strength, perseverance, and optimism that define so many people in the cystic fibrosis community. Their stories remind us that while CF can create obstacles, it does not determine a person's potential. Join us on this week's podcast as Serena, Jayla, Isabella, and Ben share their experiences living with cystic fibrosis, pursuing higher education, and what receiving a Bonnell Foundation scholarship means to them. Their stories are inspiring, their goals are ambitious, and their futures are bright. This is exactly why The Bonnell Foundation continues its scholarship program year after year: to invest in dreams, support determination, and help the next generation of leaders living with cystic fibrosis reach their full potential. Like, subscribe, and comment on our podcasts! Please consider making a donation: https://thebonnellfoundation.org/donate/ The Bonnell Foundation website:https://thebonnellfoundation.org Email us at: thebonnellfoundation@gmail.com  Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featured New: Shop our merchandise! https://thebonnellfoundation.org/product-shop/ Thanks to our sponsors: Vertex: https://www.vrtx.com Viatris:  https://www.viatris.com/en Read us on Substack: https://substack.com/@lstb?utm_campaign=profile&utm_medium=profile-page Watch our trailer of Embracing Egypt: https://youtu.be/RYjlB25Cr9Y

    53 min

  2. Jul 6

    Turning family loss into hope: Kate O'Donnell's story

    I thoroughly enjoy doing my podcasts. It’s the one thing I truly miss from my television news reporting days — interviewing extraordinary people every single day. Through The Bonnell Foundation, I now host a weekly podcast, and honestly, I wish I could do them daily. Not only does it bring me so much joy, but it also gives me the opportunity to share the stories of the incredible people I meet along the way. Kate O’Donnell is one of those people. Kate was inspired by a brother she never met. Her brother Joey died from cystic fibrosis just three months before she was born. CF is a brutal disease, but the community that rises from this tragedy is filled with some of the most inspiring, compassionate, and courageous people you will ever meet. Kate’s father, Joe O’Donnell, became one of the cystic fibrosis community’s most influential volunteer leaders and fundraisers. Together with his wife Kathy, he founded The Joey Fund in memory of Joey. Today, Kate is helping carry that legacy forward and bringing new energy and passion to the mission. And trust me — by the end of this podcast, you’re probably going to want a Joey hat of your own. You can support The Joey Fund here: https://joeyfund.org/donate-1 Kate is smart, fun, energetic, and deeply committed to making a difference in the CF community. I know you’ll be inspired by everything she continues to do. Like, subscribe, and comment on our podcasts! Please consider making a donation: https://thebonnellfoundation.org/donate/ The Bonnell Foundation website:https://thebonnellfoundation.org Email us at: thebonnellfoundation@gmail.com  Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featured New: Shop our merchandise! https://thebonnellfoundation.org/product-shop/ Thanks to our sponsors: Vertex: https://www.vrtx.com Viatris:  https://www.viatris.com/en Read us on Substack: https://substack.com/@lstb?utm_campaign=profile&utm_medium=profile-page Watch our trailer of Embracing Egypt: https://youtu.be/RYjlB25Cr9Y

    45 min

  3. Jun 29

    Jon Gay on Radio, Podcasting, and the Art of Storytelling

    Jon Gay and I had a great time recording this podcast because we not only talked about podcasting, but also reflected on our years in the broadcast business and what people should know before starting a podcast of their own. There’s a lot of laughter, behind-the-scenes stories, and practical insight for anyone curious about the world of audio storytelling. Jon and I go way back to our radio days. We worked at different stations in the same building, crossing paths in a fast-paced world built on deadlines, storytelling, and finding the right words at the right moment. Radio teaches you quickly how to think on your feet, write with purpose, deliver information clearly, and connect with people through your voice. What’s interesting is that neither of us spent much time trying to “sound like radio people.” We focused on being authentic, credible, and conversational. The voice came naturally because the storytelling mattered more than the performance. For me, podcasting became a natural extension of the work I do with my Foundation. It gave me a platform to continue having meaningful conversations, telling important stories, and creating a space where people feel comfortable enough to share their experiences honestly. That’s one reason I was thrilled to eventually hire Jon as my podcast editor. I already knew his professionalism, creativity, and work ethic from our radio days, and he understood the heart behind what I was trying to create. Jon has a real talent for shaping conversations into stories that people genuinely connect with. In this episode, we talk about the evolution from radio to podcasting, the art of authentic storytelling, and why genuine connection matters more than ever in today’s media landscape. And finally, Jon, it seems like everyone wants to start a podcast these days. I can’t tell you how many people ask me where to begin, and honestly, I don’t always have the time to walk everyone through it. So when someone comes to you and says, “I want to start a podcast,” what’s the very first thing you tell them? If you want to talk with Jon you can contact him here: jag@jagpodcastproductions.com Like, subscribe, and comment on our podcasts! Please consider making a donation: https://thebonnellfoundation.org/donate/ The Bonnell Foundation website:https://thebonnellfoundation.org Email us at: thebonnellfoundation@gmail.com  Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featured New: Shop our merchandise! https://thebonnellfoundation.org/product-shop/ Thanks to our sponsors: Vertex: https://www.vrtx.com Viatris:  https://www.viatris.com/en Read us on Substack: https://substack.com/@lstb?utm_campaign=profile&utm_medium=profile-page Watch our trailer of Embracing Egypt: https://youtu.be/RYjlB25Cr9Y

    49 min

  4. Jun 22

    Running changed and saved her life - Katie O'Grady inspires

    "Many people have their own thing that lights them on fire, for me, it's running" say Katie O'Grady.  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. To watch on YouTube: https://www.youtube.com/watch?v=zzdQraUAPfc Like, subscribe, and comment on our podcasts! Please consider making a donation: https://thebonnellfoundation.org/donate/ The Bonnell Foundation website:https://thebonnellfoundation.org Email us at: thebonnellfoundation@gmail.com  Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featured New: Shop our merchandise! https://thebonnellfoundation.org/product-shop/ Thanks to our sponsors: Vertex: https://www.vrtx.com Viatris:  https://www.viatris.com/en Read us on Substack: https://substack.com/@lstb?utm_campaign=profile&utm_medium=profile-page Watch our trailer of Embracing Egypt: https://youtu.be/RYjlB25Cr9Y

    38 min

  5. Jun 15

    Final Breath, First New Life: Jillian’s Transplant Journey

    “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. 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. 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. 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. 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. 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. 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. Her story is not just about survival—it’s about living with intention, honoring loss, and creating something meaningful from it all. 💜 What Jillian hopes to do as her Foundation grows: 2026 program updates: 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.) Home Air Quality Support- air filter units and humidifier devices Peer Mentorship- 1:1 coaching to help with weight management and treatment adherence   Hospital Comfort Blankets- handmade by volunteers for CF children in the hospital  Contact Jillian here: Email: Jill@jilliansjaywalkers.org Like, subscribe, and comment on our podcasts! Please consider making a donation: https://thebonnellfoundation.org/donate/ The Bonnell Foundation website:https://thebonnellfoundation.org Email us at: thebonnellfoundation@gmail.com  Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featured New: Shop our merchandise! https://thebonnellfoundation.org/product-shop/ Thanks to our sponsors: Vertex: https://www.vrtx.com Viatris:  https://www.viatris.com/en Read us on Substack: https://substack.com/@lstb?utm_campaign=profile&utm_medium=profile-page Watch our trailer of Embracing Egypt: https://youtu.be/RYjlB25Cr9Y

    26 min

  6. Jun 8

    Rare, But Not Invisible: Chrisy and Dr. Kingzett talk advocacy.

    Chrisy and Dr. Kingzett, two women I met when we were all trying to raise our rare voices a little louder. 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. 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. 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. 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. We also dig into the bigger questions: Why does diagnosis still take so long—and how do we fix it? What do providers, institutions, and policymakers still not understand? What do you say to someone who believes “there’s nothing I can do”? And where are we actually seeing progress in healthcare? What stands out most is this: patients are not passive participants in their care—they are often the ones holding it all together. About my guests: 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. 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. The takeaway? 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. Like, subscribe, and comment on our podcasts! Please consider making a donation: https://thebonnellfoundation.org/donate/ The Bonnell Foundation website:https://thebonnellfoundation.org Email us at: thebonnellfoundation@gmail.com  Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featured New: Shop our merchandise! https://thebonnellfoundation.org/product-shop/ Thanks to our sponsors: Vertex: https://www.vrtx.com Viatris:  https://www.viatris.com/en Read us on Substack: https://substack.com/@lstb?utm_campaign=profile&utm_medium=profile-page Watch our trailer of Embracing Egypt: https://youtu.be/RYjlB25Cr9Y

    58 min

  7. Jun 1

    Failure, Grit, and Breakthroughs with Dr. Tom Kaiser

    “Behind every breakthrough are countless failures no one ever sees—but that’s exactly what makes progress possible.” Dr. Thomas Kaiser. When I have scientists on the podcast: they’re some of the coolest, smartest, funniest people, and they’re always willing (and excited) to explain what they do in ways you can actually understand. Dr. Tom Kaiser is no exception. He lives and works in Durham, North Carolina, and brings together an impressive mix of scientist, physician, and entrepreneur. His work focuses on designing better medicines using cutting-edge technology. He began his career at Emory University in Dennis Liotta’s lab, working on antiviral drug discovery, and later helped pioneer early machine learning approaches in drug design. His research spans RSV, cancer, and neurodegenerative diseases, and he went on to earn his medical degree from the University of Oxford. Tom is now the co-founder and Chief Scientific Officer of Avicenna Biosciences, where he’s leading the development of innovative therapies aimed at improving and saving lives. And my favorite detail from his bio? He ends it by mentioning the love of his life, his wife. I’ll be honest, when I first met him, I told Dr. Kaiser he seemed like someone who must have been in a movie. He’s just that cool. His Company: Dr. Thomas Kaiser shares the story behind his company’s name, Ibn Sina, also known as Avicenna a true Renaissance figure of the Islamic Golden Age. A physician, philosopher, and scientist, Ibn Sina embodied the kind of multidisciplinary thinking that still drives innovation today. It’s a powerful reminder that the roots of modern medicine, and the spirit of discovery stretch back centuries. The Part We Don’t Talk About Enough Science is not a straight line. Not even close. Experiments fail. Clinical trials don’t work. Hypotheses fall apart after years of effort. Funding can disappear. Progress can stall in ways that are frustrating and sometimes heartbreaking especially when patients are waiting. Dr. Kaiser speaks about this with a clarity and calm that really stayed with me. Because the truth is: scientists have to keep going anyway. They carry the weight of those disappointments and start again. They adjust, rethink, rebuild, and try again. Over and over. And that persistence? That’s where breakthroughs come from. From the outside, it’s easy to celebrate the wins ... the new drug, the successful trial, the headlines. But behind every one of those moments are countless failures no one ever sees. For families like ours, waiting, hoping, advocating it matters to understand that this difficult process is also what makes progress possible. Living the Dream What if you actually got to live the dream you had as a kid? In this conversation, Dr. Thomas Kaiser shares something surprisingly personal: he feels lucky to be doing exactly what he dreamed of as a child. That early curiosity grew into a career designing new medicines and pushing the boundaries of science. From imagination to impact, his journey is a reminder that sometimes those childhood passions really can shape the future. Go to Dr. Kaisers website:  https://www.avicenna-bio.com Like, subscribe, and comment on our podcasts! Please consider making a donation: https://thebonnellfoundation.org/donate/ The Bonnell Foundation website:https://thebonnellfoundation.org Email us at: thebonnellfoundation@gmail.com  Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featured New: Shop our merchandise! https://thebonnellfoundation.org/product-shop/ Thanks to our sponsors: Vertex: https://www.vrtx.com Viatris:  https://www.viatris.com/en Read us on Substack: https://substack.com/@lstb?utm_campaign=profile&utm_medium=profile-page Watch our trailer of Embracing Egypt: https://youtu.be/RYjlB25Cr9Y

    43 min

  8. May 25

    Christopher Cornejo, late diagnosis with CF

    Living Fully with CF: Christopher Cornejo’s Journey from Diagnosis to Avatar This fast-moving and deeply engaging conversation features Christopher Cornejo, who brings a fresh and powerful voice to the cystic fibrosis community. Diagnosed with CF as an adult just three years ago, Christopher has quickly become an advocate, sharing his story on stage at a UCLA CF symposium and being honored by the Cystic Fibrosis Foundation as one of Southern California’s Finest. What makes Christopher’s story especially compelling is his perspective, shaped not only by his diagnosis, but by his career in film, including his work as a technical director on Avatar 2 and 3. In this heartfelt interview, Christopher opens up about his late diagnosis, navigating medical challenges, and how openness, community, and resilience have shaped his journey. We talk about his later diagnosis, balancing his health and his demanding film career, the importance of community and support along with his mental health and resilience.    Like, subscribe, and comment on our podcasts! Please consider making a donation: https://thebonnellfoundation.org/donate/ The Bonnell Foundation website:https://thebonnellfoundation.org Email us at: thebonnellfoundation@gmail.com  Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featured New: Shop our merchandise! https://thebonnellfoundation.org/product-shop/ Thanks to our sponsors: Vertex: https://www.vrtx.com Viatris:  https://www.viatris.com/en Read us on Substack: https://substack.com/@lstb?utm_campaign=profile&utm_medium=profile-page Watch our trailer of Embracing Egypt: https://youtu.be/RYjlB25Cr9Y

    37 min
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Trailer

4.7
out of 5
20 Ratings

About

Living with cystic fibrosis: the challenges and triumphs along the way. Live-Breathe-Inspire

Information

  • Creator
    Laura Bonnell
  • Years Active
    2019 - 2026
  • Episodes
    206
  • Rating
    Clean
  • Copyright
    © 2021-2026 The Bonnell Foundation
  • Show Website
    Living With Cystic Fibrosis

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