Living With Cystic Fibrosis

Laura Bonnell

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

  1. 23h ago

    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
  2. 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
  3. May 18

    No Time to Wait: Beth Vanstone’s Fight for Access via Advocacy

    A mother, advocate and one woman's global fight for access. Beth Vanstone is working to ensure rare disease patients don’t have to wait for the treatments they need to survive. Sometimes the most powerful friendships begin in the most unexpected places.  Beth Vanstone and I first connected on social media. At the time, we were simply two moms navigating the complicated, emotional, and relentless world of cystic fibrosis. But eventually the online messages turned into something more meaningful. Then, Beth attended one of The Bonnell Foundation’s Gala events. That’s when we finally met in person.  And from that moment on, we became dear friends.  It’s proof that social media, when used for connection and purpose, can build incredible relationships. But what inspires me most about Beth isn’t just our friendship. It’s her relentless determination. Beth is the mother of Madi, who was diagnosed with cystic fibrosis at just eight months old. Suddenly Beth was navigating a healthcare system, researching treatments, learning medical language, and fighting for her daughter’s future. Beth didn’t stop there. Instead of focusing only on her own family, she chose to fight for every family. Today, Beth is a powerful advocate in Canada and a member of the Ontario Rare Action Group, where she works to improve access to life-saving therapies for people living with rare diseases like Cystic Fibrosis. And the reality she’s fighting against is one many people don’t understand. Most healthcare systems, not just in Canada but around the world were built to treat common diseases. They weren’t designed for rare conditions that affect smaller populations. Because of that, patients with rare diseases often face enormous barriers: long approval timelines, delayed access to medications, and exhausting advocacy battles just to receive treatments that already exist. In some cases, patients wait months — even years — for medications that could dramatically improve or extend their lives. Beth is working to change that. Through her advocacy, she’s pushing for reforms that could make a real difference for patients across Canada and beyond: • Faster access to innovative therapies • Improved newborn screening programs • Better diagnostic pathways • Centers of excellence for rare diseases • Removing financial barriers like deductibles that prevent families from accessing public programs And she’s also raising an important global conversation. Here in the United States, lawmakers have debated policies like the Most Favored Nation Model, which look to international drug pricing systems like those in Canada and Europe as a model. But Beth reminds us that every system has challenges, and for rare disease patients, those challenges can be life-changing. Because when access to medication is delayed… Access is denied. And that’s why advocacy across borders matters. She’s not just advocating for her daughter. She’s advocating for every patient still waiting for their breakthrough. And today, we’re talking about what needs to change and how all of us can help make it happen. 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

    46 min
  4. May 11

    Bridging Two Countries, One Mission: Cesar and Nora Hernandez

    Bridging Two Countries, One Mission: Cesar and Nora Hernandez Fight for Spanish-Speaking CF Families “When Alex was diagnosed, we felt fear and responsibility. If we had access to information in Spanish, other families should too. No one should feel lost because of language.” Nora Hernandez From Mexico to Mission: How Cesar and Nora Hernandez Are Closing the CF Information Gap for Hispanic Families. “I came to this country to build a better future for my family. I never imagined that future would include fighting for awareness about cystic fibrosis, but now it’s part of our mission.” Cesar Hernandez Cesar and Nora Hernandez were both born in Mexico, where accurate and accessible information about cystic fibrosis has not always been readily available. While progress is being made, with more experienced physicians and improving CF care, there is still significant work to do. In the United States, members of the Hispanic community are often underdiagnosed or diagnosed later than others. That gap in awareness and access is one of the reasons The Bonnell Foundation launched its CF Familia page, offering reliable information in both English and Spanish to help families navigate the complexities of cystic fibrosis. Cesar and Nora serve as ambassadors for this effort, creating videos that provide education, updates, and reassurance to Spanish-speaking families. Cesar also serves as a board member of The Bonnell Foundation, and we are deeply grateful for his leadership and heart for this community. Cesar originally came to the United States to build a better life and financially support his family in Mexico. After meeting Nora, he made the decision to stay and make the U.S. his permanent home. Together, they are raising two children, Scarlett and Alex, who was diagnosed with cystic fibrosis. Their story is one of resilience, faith, cultural pride, and advocacy. Transcript is also available on this podcast.     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
  5. May 4

    Turning Grief Into Purpose: Margarete Cassalina’s CF Journey

    Finding Strength After Loss: A Conversation with Margarete Cassalina I first met Margarete Cassalina when we were hosted for dinner by Bob Emmelkamp at the North American Cystic Fibrosis Conference (NACFC). We connected immediately. There was an ease to our conversation, a shared understanding that doesn’t require much explanation in the cystic fibrosis community. And I have to say, her husband Marc is just as wonderful. They are the kind of people you feel grateful to know. I’m so glad we are in this CF life together. Margarete is an author, speaker, and longtime advocate and fundraiser for the Cystic Fibrosis Foundation. But long before the stages, the fundraising events, and the national advocacy, she was a mom navigating the daily realities of cystic fibrosis. In 2006, her 13-year-old daughter, Jena, died from CF. In the depths of unimaginable grief, Margarete made a powerful decision: she would honor Jena’s life not only with love, but with action. Since then, she has dedicated herself to storytelling, advocacy, fundraising, and speaking across the country about resilience, motherhood, loss, and the urgent need for continued research. Margarete’s son, Eric, also lives with CF, and in this episode you’ll hear more about how he’s doing and what life looks like for their family today. This dynamic, incredible woman will inspire you. Her story is not only about loss it’s about purpose. It’s about choosing to move forward when standing still might feel easier. And it’s about doing great things in the name of someone you love. To find her books go to Amazon.     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

    56 min
  6. Apr 27

    Education, connection, and community, bringing the CF community together.

    Education, connection, and community are at the heart  of our CF community. On Saturday, April 18th from 11:00 a.m. to 1:30 p.m. we gathered at the Next Step Gallery in Ferndale. Set in a bright gallery space surrounded by art, the event offered a welcoming environment for meaningful conversation, learning, and connection. It was pure joy with the smell of great food in the air. Food from my sister in laws restaurant, Bangkok Cuisine (in Royal Oak) filled the air, it smelled amazing and filled the air. Education Day is more than a traditional event. It’s an opportunity for people living with cystic fibrosis, parents, caregivers, healthcare professionals, and advocates to gather in one space to share experiences and support one another. A highlight of the afternoon was our “live” podcast recording, offering attendees a chance to hear authentic conversations about life with cystic fibrosis, advocacy, and the challenges and hopes shaping the community today. We all talked about education, advocacy, and what lies ahead for the CF community. The relaxed setting allowed people to connect not just through information, but through shared experiences. Events like Education Day help strengthen the bonds within the CF community by reminding everyone that they are not alone in their journey. Whether you are living with CF, raising a child with the disease, working in healthcare, or supporting someone you love, this gathering is meant to inform, inspire, and bring people together. Every story matters. Every voice matters. And every person who attends becomes part of the conversation. To watch the the premiere of our Embracing Egypt podcast enjoy it here:  https://youtu.be/SlMscQ6Spjg   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

    42 min
  7. Apr 13

    Learning, Leading, Listening: Julie Eichenberg of BreatheStrong CF

    “Being a CF aunt has shaped so much of my life. Now I get the opportunity to turn that love and connection into helping even more people at Breathe Strong CF."  Julie Dunn Eichenberg didn’t just find the cystic fibrosis community, she’s been part of it for more than 30 years as a proud CF aunt. That personal connection is what makes this next chapter so meaningful. Julie recently stepped into the role of Executive Director at BreatheStrong CF, where the focus is on helping people with cystic fibrosis live stronger, healthier lives through exercise, education, and empowerment. And while she brings decades of experience in leadership, fundraising, and relationship-building, she’s honest about getting used to the role. She’s learning. Listening. Figuring out the day-to-day. And really taking the time to understand how she can best serve the community in this new position. Before this, Julie spent 20 years at Turner Broadcasting System (now part of Warner Bros. Discovery), and later held leadership roles at Florida State University and Fan Data Insights. But no matter where her career took her, the CF community was always part of her life. She’s also been deeply involved with the Cystic Fibrosis Foundation, serving as Chair of the Georgia Chapter and contributing at the national level. We talk about what it feels like to step into a leadership role that’s so personal. The excitement, the pressure, and the responsibility that comes with it. Julie shares what she’s learning, what’s surprised her, and why her connection as a CF aunt continues to guide every decision she makes. Because for Julie, this isn’t just a job,  it’s personal. 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

    36 min
  8. Apr 6

    Men with CF and Infertility: The Science, The Options, The Hope.

    Men with CF and Infertility: The Science, The Options, The Hope. Pete Proimos is an entrepreneur, a chronic illness advocate, and the founder of the Filotimo Foundation, a nonprofit dedicated to supporting individuals and families affected by cystic fibrosis. Diagnosed with CF as an infant, Pete kept his diagnosis private for decades. It wasn’t until his forties that he chose to speak publicly about living with the disease, and that brave decision has changed lives. Pete is married to Annie, and together they are raising three children. His journey into fatherhood is part of what fuels his passion to make sure others with CF understand their options when it comes to building a family. Joining him in this important conversation is Colin Thomas, who leads the Family-Building Program at the Filotimo Foundation. Colin also lives with CF and became a father of five through IVF. In addition to his advocacy work, he serves as Vice President of Operations at IVY Fertility. He brings both professional expertise and deeply personal experience to this discussion, sharing honestly about the challenges and triumphs of becoming a parent with CF. One critical truth we discuss: Men with cystic fibrosis are not infertile because they don’t produce sperm. Most are born without a connected vas deferens — the tube that carries sperm — which makes natural conception difficult. But with medical support, including sperm retrieval and IVF, biological fatherhood is often absolutely possible. This episode dives into the mission behind the Filotimo Foundation and the powerful work being done through its infertility and family-building program, work that is giving hope, clarity, and real options to families navigating CF. 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
4.7
out of 5
20 Ratings

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

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