Living With Cystic Fibrosis

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 alo...

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....

"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,...

“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...

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....

“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...

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...

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 w...

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 Familie...

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 Ma...

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 siste...

“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...

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 abo...

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 Am...

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 t...

“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 peo...

Diagnosed with cystic fibrosis at the age of fifty, Sheri Boyd brings a rare and powerful perspective to the CF community, one shaped by decades of undiagnosed illness, years of caregiving, deep resilience, and a strong foundation of faith. Sheri is a passionate advocate and, alongside her husband Shawn, co-founded S and S Rocks Life , a platform rooted in honesty, creativity, and hope. Sheri and...

“Patients are waiting…” Those simple but profound words from Dr. Steve St. Onge set the tone for this conversation, and for why this work matters so deeply. Science has always fascinated me. I often joke that I’m not smart enough to be a scientist, but I have endless respect for the people who are, especially those who can take incredibly complex ideas and explain them in a way the rest of us can...

"Ever moment, every day is worth celebrating." Somer Love Somer Love has spent her life choosing hope, dreaming big, and showing up fully for each day. Diagnosed with cystic fibrosis at just 11 months old, Somer has grown into a powerful and compassionate advocate for the CF community. Guided by her belief that “Every moment, every day is worth celebrating,” Somer brings joy and purpose into every...

When Insurance Gets Between Doctors and Patients Dr. Elizabeth Ames and Dr. Caleb Bupp are deeply committed to their patients. But like so many clinicians today, they’re spending an extraordinary amount of time battling insurance companies instead of practicing medicine. Between prior authorizations, step therapy requirements, and outright coverage denials, physicians and their teams are buried in...

Innovating Medicine: How Science, Collaboration, and Curiosity Transform Patient Care It is always inspiring to speak with true innovators on this podcast, the people who don’t just follow the science, but actively push it forward, turning ideas into real-world solutions that change lives. We are honored to welcome Dr. Jeffry Weers whose work has profoundly impacted the cystic fibrosis (CF) commun...

Daelyn James, is someone who understands the power of owning your story. Diagnosed with cystic fibrosis at just four years old, she remembers what it felt like to go from a carefree childhood to one filled with treatments, doctor visits, and a reality she wasn’t ready to face. For a long time, Daelyn kept her CF hidden because she was worried it would change how people saw her or limit what she co...

Running for Time: Chad Eddy’s Mission Against Cystic Fibrosis For Chad Eddy, the fight against cystic fibrosis isn’t abstract, it's personal. He’s the proud uncle of two nieces born with CF. One is still living. When his goddaughter was born in 1998, (he asked their names not be used) the second of his nieces diagnosed with cystic fibrosis, Chad’s world changed. He quickly realized that simply wal...

When Jennifer joined New Hope in 2018, she didn’t just take a job — she stepped into a calling. What began as a role coordinating outreach and events quickly became a mission to change how communities understand and support grief. With her compassion, creativity, and drive, Jennifer helped New Hope grow from a local resource into a lifeline for families across the region. Her leadership was soon u...

A black leather jacket, black hoop earrings, black T-shirt and pants. You may visualize a rock star, and Colin Hemez is a rock star of sorts, but he actually works in a white coat, a doctors coat. Yes, he’s a scientist. Dr. Hemez brings a remarkable blend of science, creativity, and purpose to the fight against cystic fibrosis. Colin was born in France and raised in the high-desert town of Los Ala...