Living With Cystic Fibrosis

00:44:22

CF and Israel: Meet our friend Lea Goldberger

Living With Cystic Fibrosis ·

2026/10/05

I met Lea Goldberger, the CEO of the Cystic Fibrosis Association of Israel at a conference in Lisbon, Portugal. The European CF Society Conference.She was not always in nonprofit leadership; she spent many years working in Israel’s high-tech and product world. She later moved into healthcare and social-welfare organizations, earned a master’s degree in nonprofit and community organization management from Hebrew University, and ultimately became the CEO of Israel’s Cystic Fibrosis Foundation. Her

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00:52:04

Beyond CF: A Rare Disease Conversation with the...

Living With Cystic Fibrosis ·

2026/09/28

Rare disease connects more people than many of us realize. While every diagnosis is unique, the journey often includes many of the same challenges: searching for answers, navigating the healthcare system, advocating for better care, managing complex treatments, and finding hope along the way. Cystic fibrosis is considered a rare disease because it affects fewer than 200,000 people in the United States, just like mitochondrial disease. Although these conditions are different, the experiences of

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00:43:27

The Night Shift: Living with CF After Dark, Dr....

Living With Cystic Fibrosis ·

2026/09/21

I Was Wide Awake for Dr. Kimberly Canter’s Presentation on Sleep and Cystic FibrosisI was wide awake during a presentation about sleep, but that’s exactly what happens when you hear Dr. Kimberly Canter speak about the connection between sleep and cystic fibrosis.As the mom of two daughters with CF, I know firsthand how elusive a good night’s sleep can be. For years, our nights included coughing, breathing treatments, medications, hospital stays, and the constant worry that comes with raising

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00:15:11

16 Years of Hope: Why the Bonnell Foundation’s...

Living With Cystic Fibrosis ·

2026/09/14

Hi everyone, The Bonnell Foundation’s mission has always been deeply personal. As we celebrate our Sweet 16 Night of Hope Gala on September 19th, it’s a perfect time to reflect on why this work matters so much.What started with a need to help families navigating cystic fibrosis has grown into a community of support, education, advocacy, and financial assistance. When Molly was diagnosed with CF, there were far fewer resources available to families. The Bonnell Foundation was created to help fill

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00:36:15

CF Care Around the World with Petrina Fraccaro

Living With Cystic Fibrosis ·

2026/09/07

Friends for years and with CF as their connection, Laura and Petrina have figured out how to raise CF awareness across the world.How does cystic fibrosis care compare between Australia and the United States? Host Laura Bonnell talks with Petrina Fraccaro, CEO of CF Queensland, about her journey into CF advocacy, the mission of CF Queensland, and the support available to individuals and families living with cystic fibrosis. Laura and Petrina also discuss the global landscape of cystic fibrosis,

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00:47:57

The Anomaly: living off donated organs and dark humor...

Living With Cystic Fibrosis ·

2026/07/27

What would you do if you didn't know what your future held?For people living with cystic fibrosis, uncertainty is often a constant companion. Inka Nisinbaum faced one of the biggest unknowns of her life as she waited 15 months for a double lung and liver transplant. Every day brought the same question: Would she survive long enough to receive the gift of new organs? Rather than let fear define her, Inka prepared for every possibility. She created a list of dreams she would pursue if she lived and a

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00:44:09

Ireland's Rising Golf Star, David Howard, who happens...

Living With Cystic Fibrosis ·

2026/07/20

Luck of the Irish. Irish international amateur golfer David Howard doesn't seem to need luck with all the talent he has. We had an inspiring conversation about chasing big dreams while living with cystic fibrosis. When we recorded this podcast David had not yet qualified for the Open Championship. He did qualify just after we recorded and went on to play. Quoting from the Open Championship paper, "On the course, Howard more than held his own alongside the world’s best. He started with a

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00:53:18

CF Scholars: Stories of Determination

Living With Cystic Fibrosis ·

2026/07/13

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

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00:44:51

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

Living With Cystic Fibrosis ·

2026/07/06

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

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00:48:57

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

Living With Cystic Fibrosis ·

2026/06/29

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

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00:38:29

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

Living With Cystic Fibrosis ·

2026/06/22

"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

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00:26:18

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

Living With Cystic Fibrosis ·

2026/06/15

“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

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00:58:05

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

Living With Cystic Fibrosis ·

2026/06/08

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

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00:42:49

Failure, Grit, and Breakthroughs with Dr. Tom Kaiser

Living With Cystic Fibrosis ·

2026/06/01

“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

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00:36:43

Christopher Cornejo, late diagnosis with CF

Living With Cystic Fibrosis ·

2026/05/25

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

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00:45:36

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

Living With Cystic Fibrosis ·

2026/05/18

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,

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00:42:37

Bridging Two Countries, One Mission: Cesar and Nora...

Living With Cystic Fibrosis ·

2026/05/11

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

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00:56:12

Turning Grief Into Purpose: Margarete Cassalina’s CF...

Living With Cystic Fibrosis ·

2026/05/04

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

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00:42:29

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

Living With Cystic Fibrosis ·

2026/04/27

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

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00:35:37

Learning, Leading, Listening: Julie Eichenberg of...

Living With Cystic Fibrosis ·

2026/04/13

“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

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