Living With Cystic Fibrosis

Breath to Breath Film that celebrates the contributions by Dr. Michael Welsh A Conversation with Dr. Michael Welsh: The Science That is Saving Lives It’s always such a privilege to feature CF icons on the podcast. Over the years, we’ve been fortunate to host some of the most influential names in cystic fibrosis research, including Dr. Francis Collins, the former director of the NIH and one of the...

What does it mean to live with cystic fibrosis (CF) in Amish and Mennonite communities, where many families don’t use phones, computers, or even electricity? For some, this means relying on handwritten letters for communication, trying herbal remedies before conventional medicine, and declining treatments like lung transplants or in vitro fertilization because of cultural and religious beliefs. Up...

Delivering Hope across Continents. The why and how Summer Bauder got involved with CF Vests Worldwide. Summer Bauder is a remarkable woman whose story embodies compassion, perseverance, and global impact. Summer’s journey began as a stay-at-home mom managing a bustling household a life filled with love, chaos, and purpose. But everything changed when her brother-in-law’s daughter was diagnosed wit...

Jennifer McKinnon is fierce. Doctors said Jennifer wouldn’t live past the age of three. Today, she’s a single mom of twins, an unstoppable advocate who’s raised over a million dollars for cystic fibrosis research, and the founder of Just One More Breath . Her story is proof that while CF is tough, Jennifer is tougher, and that hope, when held fiercely, can change everything. Jennifer was born in t...

The Triple Threat to the Rare Disease Ecosystem — A Conversation with Dr. Wendy Chung Sometimes you come across someone whose work changes the way you think about an entire field. That’s exactly what happened when I read about Dr. Wendy Chung in Rare Revolution Magazine . Dr. Chung is one of those rare people who stands at the intersection of science, medicine, ethics, and humanity. She’s a clinic...

Our Harvest of Hope Gala was unforgettable—so much love, energy, and sparkle! The theme this year was Diamonds and Denim , and the outfits did not disappoint. Huge thanks to our co-chair, Heather Trammell. Heather is not only a CF mom but also a source of wisdom and support in our community. She did an amazing job organizing the Gala and has already committed to leading again in 2026. Heather and...

If you’ve ever been part of the cystic fibrosis community, you’ve probably heard of the sweat chloride test, maybe you’ve even had one yourself. But what does that test really measure, and why does it still matter in the age of CF modulators? Laura talks with Dr. Patrick Sosnay , Vice President and Head of CF Development at Vertex Pharmaceuticals. Before joining Vertex, Dr. Sosnay was a clinician...

When Pete Proimos decided to share his cystic fibrosis story at 40, after decades of silence , it marked a turning point. That decision, guided by his philosophy “Out at 40,” sparked a movement built on honesty, empathy, and empowerment. Today, as CEO of the Filotimo Foundation , Pete is redefining what it means to thrive with an invisible illness and helping others find strength in their own stor...

Turning Diagnosis into Purpose: Deana and Liam’s Mission When Liam was diagnosed with cystic fibrosis (10 years ago) at just three weeks old, Deana’s world shifted overnight. What began as one mother’s fight for her child has grown into a movement empowering families, educators, and kids facing chronic illness, all through courage, creativity, and hope. From bestselling advocacy workbooks to emoti...

I had the joy of meeting Heather Ashle in person at a Family Night hosted by Children’s Hospital of Michigan a couple months ago. Her energy lit up the room as she spoke—honestly, nervously, and beautifully, about what it means to live with cystic fibrosis (CF). It was her first time speaking at a CF event, and you could feel how much it meant to her. Heather grew up finding refuge in fantasy, boo...

The unstoppable Jennifer Dunlea is an advocate, a fighter, and an all-around powerhouse. Born with Cystic Fibrosis, Jen has faced more medical battles than most people do in a lifetime, including surviving a rare cancer at just 23 years old. She’s a two-time double lung transplant recipient, living with diabetes and gastroparesis, and still somehow finds the energy to raise her voice, and awarenes...

The challenges and triumphs of living with a rare disease. Leslie Baldwin shares her personal journey with Common Variable Immune Deficiency and Ehlers-Danlos Syndrome. You'll hear what fueled her passion for advocacy and the creation of Michigan Rare (MI-RARE) . Together, they discuss the power of community, the importance of patient empowerment, and how collaboration with policymakers can expand...

Miss America 2025 Abbie Stockard: A Champion for Kids, Health, and Cystic Fibrosis Abbie Stockard, Miss America 2025, joins us to share her incredible journey, from Auburn University nursing student and Tiger Paws dancer to national advocate and role model. At just 22, Abbie has earned over $89,000 in scholarships through the Miss America Opportunity and is using her platform to promote pediatric...

What if a scan could do more than show you a picture, what if it could tell you a story about what’s happening inside a child’s body, in real time? That’s exactly what Dr. Chris Flask is working to make possible. Dr. Flask is a Professor of Radiology, Biomedical Engineering, and Pediatrics at Case Western Reserve University and University Hospitals of Cleveland. He’s at the forefront of an excitin...

“I always say that singing and performing was as much a part of my DNA as cystic fibrosis.” Julia Rae From the moment Julia Rae could speak, she was singing, and from the moment she could dream, she was already imagining a bigger stage. As her mother fondly recalls, at just two years old, Julia was watching Barney on TV and asked, “How do I get in there and do that with him?” That instinct, that p...

Never Just Surviving: Sophie Holmes on Running 36 Marathons with Cystic Fibrosis Despite a schedule packed with training, advocacy, and breaking world records, Sophie Holmes of the U.K. always makes time to share her story, and we’re so grateful she did. Diagnosed with cystic fibrosis at just four months old, Sophie was told she might not live past her teens. But rather than letting that define he...

  “It’s an honor to be an advocate,” says Laura Bonnell, founder of The Bonnell Foundation. “We are the government—people are. If we don’t fight for fair laws that help the people they’re meant to serve, who will?” In this episode, Laura is joined by five passionate advocates—some seasoned, some new—who recently traveled to Washington, DC, to meet with lawmakers. Together, they share their persona...

We have a powerful conversation about dedication, innovation, and impact in the cystic fibrosis community in this podcast. I’m joined by two incredible guests from MVW Nutritionals: Mike Walters and Jason Vandiver. Mike Walters is a true pioneer in pharmaceutical business and innovation, with nearly four decades of experience. He began his career at Johnson & Johnson, where he spent 14 years in le...

Substack is where I discovered Dr. MeiLan Han! I was browsing through and was pleasantly surprised to read an article, and learn that she wrote a book called, Breathing Lessons . And to top it off, she’s from my home state of Michigan. I also learned the Dr. Han’s book was “a passion project during the pandemic.” I’m delighted to share a conversation with Dr. MeiLan Han, one of the country’s most...

"Oh, the people you’ll meet, and the places you’ll go..." That classic Dr. Seuss line couldn’t have been more true when I found myself at a rare disease conference, taking with Dr. Gabriel Cohn. A quiet presence with a resume that reads like a roadmap through the last 30 years of rare disease breakthroughs, Dr. Cohn is the kind of person who reminds you just how much heart and science it takes to...

From Costco to Connection: Podcast Advice That Changed Everything When I spotted a feature on podcasting in The Costco Connection , I was excited. When I saw Michelle Glogovac featured? I knew I had to reach out. That decision turned into one of the best moves I’ve made for growing my podcast. Michelle,  THE Podcast Matchmaker®, publicist, and author of How To Get On Podcasts, shared simple, power...

Live from Mix and Mingle Education Day: A Powerful Conversation with Caregivers In this deeply moving live episode recorded at the Mix and Mingle Education Day, we brought together a powerful group of caregivers—grandparents, parents, stepparents, dads, and friends—for a heartfelt discussion about the emotional journey of caring for a loved one with cystic fibrosis. What started as a simple idea t...

Cystic Fibrosis and obesity?  Until recently this has not been a topic of conversation for the CF community. The reason for obesity in the CF community is better health and longer lives, so the concern is now a reality.  University of Michigan CF doctor, Carey Lumeng is researching the issue.  As he says in this podcast, researchers have a lot to learn about the connection between better health in...

A 70-year-old person with cystic fibrosis. It’s a phrase that wasn’t just uncommon a few decades ago—it was virtually unheard of. When Luanne McKinnon was diagnosed in 1969 at just 13 years old, doctors told her parents she might live to be 19 years old. Today, Luanne stands on the edge of her 70th birthday—a milestone that not only redefines possibility but embodies resilience, creativity, and pu...

Eight miles. Two friends. One cause. This episode now holds even deeper meaning. Jacob Venditti, who has since passed away from complications of cystic fibrosis (August 16th 2025), shares his story with a raw honesty that feels like a gift. He opens up about life with CF, the daily challenges he faced as he prepared for a lung transplant, and the vital role of community in carrying him forward. He...