Living With Cystic Fibrosis

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 respected voices in lung health and a...

"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 change lives.

Dr. Gabe Cohn is the Ex...

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, powerful strategies that helped expand my r...

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 to gather voices turned into our most ...

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 CF and obesity.  

We also talk abou...

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 purpose.

Born in Dallas, Texas in 1955,...

Eight miles. Two friends. One cause.

In this inspiring episode, Jacob Venditti opens up about his life with cystic fibrosis, offering candid updates on his health and the challenges he faces as he prepares for a lung transplant. He emphasizes the vital role of community support and shares how his work with the Live Fearlessly Foundation fuels his mission to empower others. Jacob also sheds light on the rare disease income threshold ...

From Clunky to Cutting-Edge: The Evolution of Airway Clearance with Nicole Dunn

When our daughters first received their vest machines, they felt like they weighed a hundred pounds and had to be plugged into the wall. The vests didn’t fit well—riding high in the armpits and leaving much to be desired in comfort and function. Fast forward 25 years, and everything has changed.

In this episode, Laura talks with Nicole Dunn, Senior Market...

CFRI’s Executive Director, Siri Vaeth is sunshine to me. She’s a dear friend.

We met after Siri took on her role with the Cystic Fibrosis Research Institute. I consider Siri a dear friend, and a mentor.  Siri is truly among the smartest people I know.  She is an advocate for her daughter Tess, who has CF,  and is an incredible advocate for the CF community.  If you need legislation explained to you, Siri can help you. She can put it...

I love that I was able to bump into Aaron Trumm via an email.  He reached out to check in about our scholarship program for college.  We only award grants to undergrad students, but I was intrigued by all I learned about him.

Aaron has CF, he is post-transplant, he started a recording label, he plays the piano and wraps, And he worked with the man known as the Lion of Zimbabwe. And he’s going to law school in the Fall.

We have a lot ...

CF Dad Bob Coughlin see's a cure in the future for his son, and all of our kids. His high energy in this podcast is contagious. 

In this conversation, Laura Bonnell and Bob Coughlin discuss the journey of Bob's son, Bobby, who has cystic fibrosis. They explore the advancements in treatment, the importance of advocacy, and the intersection of policy and innovation in the biotechnology sector. Bob shares his personal experiences as a ...

Michael Armstrong is a 25-year-old pre-law student. He loves to read, paint, play card games and video games. He was diagnosed with CF as an infant. We’re going to talk about his CF journey and how life took a turn when he was being evaluated for a lung transplant in 2023 and 2024.   Michael was featured in the 2025 Portraits of cystic fibrosis calendar and our first or second  calendar he was featured when he was about five with h...

If you lose a child to CF, what does that do to parents? To their identity? And their place in the CF community.  These are hard discussions to have, but for a couple years now Peggy Hawkins has want to share her story on this podcast.

Peggy talks about the toll waiting for a transplant takes on a family.  One of the issues was that one of them always had to work, in this case it was her husband, so she stayed with Stephen. 

Peggy an...

Saving yourself by way of advocacy. Living with cystic fibrosis podcast host, Laura Bonnell talks to CF advocate, Amanda Boone about the fight that grew from a threat to her medications in Colorado. Amanda has led the way against the Prescription Drug Affordability Board (PDAB).  Amanda, who has CF, was struggling prior to 2019 because her health was declining. As a result, she started CF United. It's a grassroots organization that...

I have known Becky Penuel for many years. Becky used to run Miles for cystic fibrosis and then merged her nonprofit with Brian Callanan’s nonprofit, CF Life Fitness. After the merger, the nonprofit name is now: BreatheStrong. Becky is the Executive Director and was not able to join us today but, her Director of Operations is with us .

Shawna Gray is the director of Operations and Programs, and we are happy to have her. She is also t...

The NonProfit Spot: a wealth of resources and classes about how to grow your board, fundraise and make strategic decisions that will change the trajectory of your Foundation for the better.  They have an excellent newsletter too. 

Heather Carmona, the Managing Director (and co-founder) of NonProfit Spot is a great friend and I am honored to share all that she does. Heather and I have known each other for about 20 years, which seems ...

I encourage everyone to attend conferences when you can. I meet the most interesting experts in the field of the nonprofit world. From scientists, to pharma, to other nonprofit execs like me. I was thrilled to meet Jenifer Waldrop. She joined the Black Women’s Health Imperative as the Executive Director of the Rare Disease Diversity Coalition (RDDC) in October 2022. 

The organization address challenges faced by rare disease patients...

Melissa Yeager, Executive Director and Co-Founder of Claire’s Place Foundation

Since the planning stages of Claire’s Place Foundation, Melissa has spent countless hours working for the cause and, of course, raising her two children, Claire (the foundation’s namesake) and Ellie.  With many years’ experience in project management and event planning, she has the drive and the experience needed to get the foundation off the ground as we...

Emily Schaller, 42, is a heroine with one goal in mind, to Rock CF.

A lot of laughs on this podcast with my friend Emily!  She talks about her health, the Foundation, new and old legislation and what's coming up in 2025!

Equal parts spark, wit and humor, Emily is claiming her victories against cystic fibrosis having launched the Rock CF Foundation in 2007 to heighten public awareness and raise funds to increase the quality of life fo...