Living With Cystic Fibrosis

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 a...

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 possibil...

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, ...

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 ...

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&rsqu...

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 statio...

"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 fibros...

“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, J...

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 abou...

“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, Nort...

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 Foundat...

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....

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 thi...

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 wonder...

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 ...

“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 Exec...

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, a...

Three 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 beds...

I’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 ti...