Living With Cystic Fibrosis

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 access and resources for those living with rare conditions.TakeawaysAdvocacy is essential for the rare disease community.Building connections provides vital support.Patients should feel empowered to speak up for their health.Collaboration with policymakers can drive positive change.Storytelling inspires and unites the community.Engagement raises awareness and strengthens support networks.Advocacy days introduce rare disease issues to lawmakers.Recognizing unique challenges leads to better understanding.Coalitions amplify the collective voice of rare disease advocates.Empowering patients and caregivers enhances qualit

Miss America 2025 Abbie Stockard: A Champion for Kids, Health, and Cystic FibrosisAbbie 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 health, women’s leadership, and awareness for cystic fibrosis (CF).Inspired by her best friend Maddie, Abbie has raised over $200,000 for CF research and was honored as the Cystic Fibrosis Foundation’s “2024 Hero of Hope.” She also created High Five for Kids, a wellness program that empowers children—including those with chronic illnesses, to build healthy habits for life.In this episode, Abbie talks about balancing school, service, and advocacy, and how she’s using her voice to drive real change in healthcare and beyond. Don’t miss this inspiring conversation with a young woman leading with heart, purpose, and unstop

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 exciting transformation in medical imaging, one that could change the way we care for children with rare genetic diseases like cystic fibrosis (CF) and polycystic kidney disease (PKD).“Our goal is to turn imaging, instead of just image creation, into data,” says Dr. Flask. “We want to create numbers. So we can say, this is what’s going on in the lungs. And when we put these patients on modulator therapies, we can see a 10 percent improvement in their lung disease. And similar responses in the pancreas, the liver, and the gut. That’s our goal—quantifying it through this fingerprinting methodology.”This approach, MRI fingerprin

“I always say that singing and performing was as much a part of my DNA as cystic fibrosis.” Julia RaeFrom 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 pull toward performance, was never just about the spotlight. For Julia Rae, the stage became her sanctuary, and later, her platform for purpose.Diagnosed with cystic fibrosis at birth, Julia’s life has never followed an easy script. But instead of letting a chronic illness limit her, she embraced the full range of her voice, as a singer, actress, writer, and advocate. She didn’t just want to perform; she wanted to make a difference.At 16, Julia founded Singing at the Top of My Lungs, a nonprofit inspired by her own hospital experiences. Initially, the organization supported both CF research and creative therapies at ch

Never Just Surviving: Sophie Holmes on Running 36 Marathons with Cystic FibrosisDespite 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 her, she’s spent her life rewriting the narrative. Her latest, jaw-dropping accomplishment? Running 36 marathons in 36 days. That’s right—36 consecutive days, 26.2 miles each day, driven by pure determination and an unshakable belief in what’s possible.Sophie is not only an elite athlete and personal trainer, she’s a powerful advocate for chronic illness awareness. In this episode of the Living with Cystic Fibrosis podcast, she talks about what fueled her through each grueling mile, how she manages the intense physical demands of endurance sports while living with CF.“Mindset is everything.” – Sophie HolmesIt’s easy to s

 “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 personal experiences, insights on advocacy, and why storytelling and persistence matter in influencing policy.The conversation highlights:How to build relationships with legislative staffThe role of personal stories in driving changeThe importance of staying organized and adaptableAdvice for those who can’t travel but still want to advocateThe emotional and rewarding aspects of standing up for what mattersPlus, we're joined by a lineup of experts working at the intersection of science, innovation, and policy:Dr. Andy Kocab, VP of Research at ONL Therapeutics, shares how biotech is advancing treatments for retinal diseases. Co

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 leadership roles across sales, marketing, and management development. In 1996, Mike launched his first company to help organizations navigate product commercialization in the U.S. Since then, his work in the CF space has been nothing short of groundbreaking. He founded and led Source CF, MVW Nutritionals, and CF Global Services, playing a key role in bringing many standard-of-care treatments to market. A Vanderbilt graduate with degrees in Biochemistry and Chemistry, Mike brings both scientific insight and a deep commitment to rare disease care.Joining him is Jason Vandiver, Chief Operating Officer of MVW Nutritiona

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 tireless advocate for people living with chronic respiratory conditions.Dr. Han is a Professor of Medicine and Chief of Pulmonary and Critical Care at University of Michigan Health. She’s not only cared for patients at the bedside but has devoted her career to understanding lung disease at its roots, with a special focus on chronic obstructive pulmonary disease (COPD), a condition that remains widely under-recognized and underfunded. Through her research, Dr. Han is helping to uncover how diseases like COPD affect the lungs in different ways, with the goal of making treatment more

"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 Executive Director and Medical Director of the Rosenau Family Research Foundation. He stepped into the role in October, bringing with him over three decades of experience that spans academic medicine and the biotechnology industry. A licensed, board-certified Clinical Geneticist and Obstetrician-Gynecologist, Dr. Cohn has contributed to the development of multiple therapeutics aimed at treating rare genetic disorders—a career built on both clinical precision and compassionate innovation.Beyond RFRF, he’s also the Chief Medical Officer at iECURE, Inc., a biotech company pioneering gene

From Costco to Connection: Podcast Advice That Changed EverythingWhen 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 reach. One standout? Getting featured on other podcasts. It boosted my visibility, brought in new listeners, and gave me fresh insights into how other hosts run their shows.In this episode, Michelle shares her approach to storytelling, visibility, and the importance of showing up. Her message: Your story is your superpower.If you want to grow your platform and connect with more listeners, don’t miss this one.“Your story is your superpower. The more you share it, the more people you help—and the more you grow in the process.”— Michelle Glogovac,The Podcast Matchmaker®. Michelle is ter

Live from Mix and Mingle Education Day: A Powerful Conversation with CaregiversIn 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 beautiful and emotional podcast yet. There were tears, laughter, and unforgettable stories. We were honored to be joined by a Grief Counselor who helped guide us through the complex feelings that surfaced during our conversation.This episode is a raw, real, and uplifting tribute to the strength, vulnerability, and love that caregivers bring to their roles every single day.Join us for a conversation that honors the heart of caregiving and the power of community.You’ll hear from:(00:00:00) Laura Bonnell - Host - (Egypt, Foundation programs, legislation)(00:16:49)  Lois Teicher - CF Gr

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 about The Bonnell Foundation fellowship program. A few years ago we started the program to encourage doctors to work in the specialty field of cystic fibrosis. Dr. Lumeng is one of the doctors who oversees this program.Dr. Lumeng is the Frederick G.L. Huetwell Professor for the Cure and Prevention of Birth Defects and Professor in Pediatrics and Molecular and Integrative Physiology. Dr. Lumeng is the Division Chief of Pediatric Pulmonology at the C.S. Mott Children's Hospital and Associate Director of the Michigan MSTP Program.He grew up in Indiana and graduated from Princeton Universit

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, Luanne was diagnosed at a time when cystic fibrosis was still barely understood. No vests. No targeted medications. No community. And yet, she carved out a life of profound impact. “I stand as a witness to the possible.” says Luanne McKinnonAfter earning a Master of Fine Art in Painting and a PhD in Art History, she launched a celebrated career in the visual arts—owning an art dealership in New York City, directing major university museums, publishing works, and curating over 35 exhibitions. She even became a Fellow at the prestigious Getty Research Institute.And while that would b

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 amendment he's championing, which aims to create more equitable opportunities for patients. The conversation builds toward his upcoming Crossing 4 CF event, showcasing his unwavering resilience and commitment to living fearlessly.The heartfelt conversation continues with Rob Brown. Rob talks about their upcoming 80-mile paddle race aimed at raising awareness for cystic fibrosis (CF). Jacob shares how open ocean paddling has become both a personal passion and a powerful way to connect with the CF community. Rob reflects on his enduring friendship with Jacob and their mutual love for

From Clunky to Cutting-Edge: The Evolution of Airway Clearance with Nicole DunnWhen 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 Development and Education Manager at Tactile Medicaland an expert on the AffloVest. With a strong background as a registered respiratory therapist and a deep passion for respiratory education, Nicole is at the forefront of innovation in airway clearance therapy.Together, they dive into the evolution of the AffloVest—from its design improvements to the company's mission to provide accessible, life-changing therapy for people with chronic respiratory diseases like cystic fibrosis. Nicole shares how patient feedback has shaped product development, the impact of CF modulators on airway

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 in a way you'd understand.In this insightful conversation, we explore the evolving landscape of the Cystic Fibrosis (CF) community. We share personal updates and discuss key advancements in treatment, while also addressing ongoing challenges faced by patients and families. Topics include the emotional weight of age milestones for those with CF, collaborative organizational support, and critical legislative issues impacting the rare disease community. The episode also delves into the growing cancer risks in CF, the importance of regular screenings, and the difficulties patients face

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 to talk about!  To get in touch with Aaron:https://aarontrumm.comA music production education brand:https://recordinglikemacgyver.com This site Aaron says is disappearing soon! https://nquit.com  Please like, subscribe, and comment on our podcasts!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Thanks to our sponsors:Vertex: https://www.vrtx.comViatris:  https://www.viatris.com/en

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 caregiver and advocate, emphasizing the need for continued support and education in the medical community. The conversation highlights the emotional rollercoaster of living with a chronic illness and the hope brought by new therapies. In this conversation, Bob Coughlin shares his emotional journey as a parent of a child with cystic fibrosis, detailing the transformative impact of new treatments and the importance of community support. He discusses the hope brought by advancements in gene therapy and the future of cystic fibrosis treatment, emphasizing the need for continued advocacy

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 his  brother.  Michaels dad, Tom was on our Board of Directors for many years…and I was lucky to see him just the other day.Thanks for sharing your story Michael. Please like, subscribe, and comment on our podcasts!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Thanks to our sponsors:Vertex: https://www.vrtx.comViatris:  https://www.viatris.com/en

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 and her husband are the parents of three men. She lives in South Carolina  now but was born and raised in Detroit. Peggy worked as a nurse for 43 years (not in CF).Their oldest son Chris is 37 and their youngest is 31 years old. Stephen who died from complications of CF was the middle child. He died at 29 years old. To get in touch with Peggy you can email her here: stephen65roses@aol.com Please like, subscribe, and comment on our podcasts!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us