Podcast
Living With Cystic Fibrosis
Hosted by Laura Bonnell · EN
Living with cystic fibrosis: the challenges and triumphs along the way. Live-Breathe-Inspire
31episodes
Episodes
Newest firstAll episodes
Christopher Cornejo, late diagnosis with CF
1w ago00:36:43Tap to summarizeLiving 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. Please like, subscribe, and comment on our podcasts!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featuredThanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/enRead us on Substack: https://substack.com/@lstb?utm_campaign=profile&utm_medium=profile-pageWatch our trailer of Embracing Egypt: https://youtu.be/RYjlB25Cr9Y
Transcribe →No Time to Wait: Beth Vanstone’s Fight for Access via Advocacy
2w ago00:45:36Tap to summarizeA 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. Please like, subscribe, and comment on our podcasts!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featuredThanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/enRead us on Substack: https://substack.com/@lstb?utm_campaign=profile&utm_medium=profile-pageWatch our trailer of Embracing Egypt: https://youtu.be/RYjlB25Cr9Y
Transcribe →Bridging Two Countries, One Mission: Cesar and Nora Hernandez
3w ago00:42:37Tap to summarizeBridging 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. Please like, subscribe, and comment on our podcasts!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featuredThanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/enRead us on Substack: https://substack.com/@lstb?utm_campaign=profile&utm_medium=profile-pageWatch our trailer of Embracing Egypt: https://youtu.be/RYjlB25Cr9Y
Transcribe →Turning Grief Into Purpose: Margarete Cassalina’s CF Journey
4w ago00:56:12Tap to summarizeFinding 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. Please like, subscribe, and comment on our podcasts!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featuredThanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/enRead us on Substack: https://substack.com/@lstb?utm_campaign=profile&utm_medium=profile-pageWatch our trailer of Embracing Egypt: https://youtu.be/RYjlB25Cr9Y
Transcribe →Education, connection, and community, bringing the CF community together.
Apr 2700:42:29Tap to summarizeEducation, 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 Please like, subscribe, and comment on our podcasts!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featuredThanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/enRead us on Substack: https://substack.com/@lstb?utm_campaign=profile&utm_medium=profile-pageWatch our trailer of Embracing Egypt: https://youtu.be/RYjlB25Cr9Y
Transcribe →Learning, Leading, Listening: Julie Eichenberg of BreatheStrong CF
Apr 1300:35:37Tap to summarize“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. Please like, subscribe, and comment on our podcasts!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featuredThanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/enRead us on Substack: https://substack.com/@lstb?utm_campaign=profile&utm_medium=profile-pageWatch our trailer of Embracing Egypt: https://youtu.be/RYjlB25Cr9Y
Transcribe →Men with CF and Infertility: The Science, The Options, The Hope.
Apr 600:49:13Tap to summarizeMen 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. Please like, subscribe, and comment on our podcasts!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featuredThanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/enRead us on Substack: https://substack.com/@lstb?utm_campaign=profile&utm_medium=profile-pageWatch our trailer of Embracing Egypt: https://youtu.be/RYjlB25Cr9Y
Transcribe →Hope for the final ten percent, Dr. Alan Cohen, Arcturus
Mar 3000:48:27Tap to summarizeThree decades caring for patients with CF, that’s Dr. Alan H. Cohen. His experience continues to shape everything he does today. As a pediatric pulmonologist (board-certified) , he has walked alongside patients through some of their hardest moments, including advanced lung disease and transplantation. Dr. Cohen was previously co-director of the largest pediatric lung transplant program in North America.Those years at the bedside are what ultimately led Dr. Cohen into drug development, where he has spent more than 25 years working to turn scientific innovation into real-world therapies for people who are still waiting for better options. As the Chief Medical Officer of Arcturus Therapeutics, he brings both clinical perspective and urgency to the company’s work in mRNA-based therapies for cystic fibrosis and other rare diseases.“Clinical trials aren’t just about science, they’re about people who are willing to help move the field forward.”In this thoughtful and engaging conversation, Dr. Cohen reflects on how cystic fibrosis care has evolved over the past 35 years, from symptom management to breakthroughs in gene therapy and mRNA technology. Dr. Cohen discusses why clinical trials are essential to progress, especially for rare diseases, and why patient participation plays such a critical role in moving new therapies forward. Dr. Cohen also shares how the strength of the CF community continues to inspire his work, offering both realism and hope for the future of CF research.You’ll also hear more about the personal side of this wonderful scientist! The Arcturus team packed Bonnell Foundation Hospital Bags with comfort products for caregivers, and CF adults for California CF Clinics. #teamworkClinical trials are an important step to understand whether a medicine works for its intended purpose. Please see our active clinical trials below. For any questions email: Community@ArcturusRx.com. Please like, subscribe, and comment on our podcasts!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featuredThanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/enRead us on Substack: https://substack.com/@lstb?utm_campaign=profile&utm_medium=profile-pageWatch our trailer of Embracing Egypt: https://youtu.be/RYjlB25Cr9Y
Transcribe →Spreading Joy in a Small World: Julie McCaffrey’s Story
Mar 2300:28:37Tap to summarizeI’ve known Julie McCaffrey for years. She lives about 40 minutes from me, in Romeo, Michigan. Julie and her husband, Curtis, are raising four daughters, and their oldest, Jenna—now 20—lives with cystic fibrosis. What still makes me smile is how Julie and I were connected long before we ever met through the CF community… and we had no idea. We worked in the same building, in the same industry, at the same time. Both of us were in radio. I was a news reporter at WWJ, while Julie was first a morning show intern, then events team and finally, board operator for WYCD. Even our podcast editor worked at another station in that very same building. Proof that sometimes the universe plants people in your orbit long before it tells you why. Julie’s career path reflects both her curiosity and her compassion. She’s worked in radiology, orthopedics, and labor and delivery. She’s supported students as a paraprofessional in an elementary school and worked in a group home for adults with intellectual disabilities. Today, she works at Target—and genuinely loves it. Wherever she goes, she brings the same energy: presence, kindness, and care. At the heart of everything Julie does is a simple but powerful mission—to spread joy. She is deeply passionate about mental health advocacy, especially within the cystic fibrosis community. And despite the very real financial strain that comes with healthcare and insurance challenges, Julie continues to show up with an unwaveringly positive spirit. Not a performative positivity—but a grounded, generous kind that makes people feel seen. If you take just one thing from Julie today, let it be this: You are brilliant. You are beautiful. And you can do anything. (Suicide was discussed in this episode. Anyone needing help can call or text #988). Please like, subscribe, and comment on our podcasts!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featuredThanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/enRead us on Substack: https://substack.com/@lstb?utm_campaign=profile&utm_medium=profile-pageWatch our trailer of Embracing Egypt: https://youtu.be/RYjlB25Cr9Y
Transcribe →Making medical moments less scary thanks to Abby Rose (Child Life Specialist)
Mar 1600:42:22Tap to summarize“What if a blood draw didn’t have to feel terrifying, Abby Rose is a child life specialist. And if you have never taken advantage of all they have to offer when your child is hospitalized, you’re going to want to connect with them after you listen or watch this podcast!The North American Cystic Fibrosis Conference is one of those places you attend to learn—but it’s also a place where you meet people who quietly leave a lasting mark. One of those people is Certified Child Life Specialist Abby Rose.Abby works at Seattle Children’s Hospital, supporting both the Cystic Fibrosis program and Pediatric Hemodialysis. Originally from Wisconsin, she earned her bachelor’s degree in Psychology and Family Studies from the University of Wisconsin–Eau Claire, followed by a master’s degree in Child Life from Edgewood College.In her role, Abby focuses on outpatient care, working closely with children and families to create individualized coping plans. She supports kids through procedures many of us take for granted—blood draws, throat swabs, vaccinations, while also helping families navigate pill swallowing, treatment tolerance, sibling support, and the everyday challenges that can feel overwhelming in CF care.People like Abby made a profound difference for kids like one of my daughters—children who are frightened by procedures or don’t fully understand what’s about to happen to them. Child Life Specialists play a critical role in hospital settings, helping children feel safer, more informed, and more in control during some of their most vulnerable moments.Today, I’m excited to talk with Abby about the work she does—and why it matters so deeply.In our conversation, we’ll explore:The Beads of Courage program and why it’s so meaningful to children and familiesWhy Abby is such a strong advocate for transparency, open communication, and the rights of patients and familiesWhat draws her personally to Child Life work, and why she believes in it so deeplyAnd some of the “tricks of the trade”—the practical tools and techniques she uses to help kids feel calmer and more cooperative during procedures like blood drawsThis is a conversation about care, trust, and the people who help make hard moments just a little bit easier. Please like, subscribe, and comment on our podcasts!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featuredThanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/enRead us on Substack: https://substack.com/@lstb?utm_campaign=profile&utm_medium=profile-pageWatch our trailer of Embracing Egypt: https://youtu.be/RYjlB25Cr9Y
Transcribe →