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 clinical and molecular geneticist, the Chief of Pediatrics at Boston Children’s Hospital, and the Mary Ellen Avery Professor at Harvard Medical School. She leads NIH-funded research into the genetics of conditions like pulmonary hypertension, autism, birth defects, and a wide range of rare diseases. She’s advanced newborn screening for life-threatening disorders like spinal muscular atrophy and Duchenne muscular dystrophy — work that means the difference between life and death for many families. She’s been recognized with the Rare Impact Award from NORD, is a member of the National Academy of Medicine, and is a leading voice on the ethics of genomics.

But titles and accolades only tell part of her story. What stands out most is her deep commitment to the people behind the science, the families living day in and day out with conditions that most of the world has never heard of.

When we spoke, Dr. Chung described what she calls the “triple threat” to the rare disease ecosystem:

Misinformation in health that spreads faster than facts and erodes trust in science.

Lack of access to healthcare, leaving too many without the treatments they need, when they need them.

Insufficient investment in research, slowing the pace of discovery and delaying life-saving therapies.

Each of these challenges is daunting on its own, but together they create a fragile and often hostile environment for progress in rare disease research and care.

She pointed out that while most genetic conditions are rare individually, collectively they are surprisingly common — affecting millions worldwide. That’s a staggering thought, especially considering how little public awareness and funding rare diseases often receive.

We also talked about autism, a condition she has studied extensively. She emphasized that autism is a spectrum, with multiple causes, the majority of which are genetic. Understanding that complexity is crucial, not only for advancing science but also for helping families cope and make informed decisions.

One of the threads running through our conversation was the urgent need for better communication in science. In an age where misinformation spreads in seconds, the ability to convey facts clearly and accessibly isn’t just a nice skill — it’s a necessity. Miscommunication or confusion doesn’t just impact public opinion; it influences policy decisions, research funding, and the direction of healthcare itself.

Dr. Chung stressed that advocacy matters at every level — from the conversations parents have with their children’s doctors to the policies shaped in Washington. Community engagement isn’t just a feel-good idea; it’s one of the most effective ways to accelerate progress. Patients, families, scientists, and policymakers all have a role to play, and collaboration among them is where breakthroughs happen.

In the end, our conversation left me with two truths. First, that rare disease progress depends on persistence from so many people. The researchers who refuse to give up, from families who continue to fight for answers, and from advocates who push for change. Second, that truth itself is a kind of medicine. The more accurately, compassionately, and consistently we can communicate about rare diseases, the better chance we have at building a healthcare ecosystem that works for everyone.

Dr. Wendy Chung is leading that charge, not just in the lab, but in the public square. And in this fight, both matter equally.

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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 her husband Chris (who, fun fact, is now best friends with Joe Bonnell) bring so much heart to our mission.

We were also grateful to have Tara Fahrner with us. Tara is a CF mom to 2½-year-old Beau, who was diagnosed at birth through newborn screening. Tara describes the diagnosis as a shock, but she’s thankful for the strong CF community that has surrounded her family. She and Heather both serve on the Quality Improvement Team at the University of Michigan as well as our Advisory Board.

And a big shout-out to Dave Ingraham, who traveled three hours from Lake City, Michigan, to be at the Gala. Dave’s truck is wrapped with The Bonnell Foundation logo and QR code, and he drives it in parades to spread awareness. He’s fully embraced his granddaughter Briar Lynn’s journey with CF, supporting both her and his daughter, a single mom. His dedication is inspiring.

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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 and researcher at Johns Hopkins, where he helped define the genetic criteria for diagnosing CF and co-founded the influential CFTR2 database.

Dr. Sosnay brings his expertise, and a gift for explaining complex science. He unpacks the real story behind sweat chloride testing. Together, we explore:

* What the sweat test actually measures — and how it connects to the CFTR protein.
* Why sweat chloride is still vital long after diagnosis.
* How researchers use it to track CF progression and measure treatment success.
* What all this means for people living with CF and their families today.

This episode redefines the sweat chloride test as more than just a diagnostic number, it’s a powerful marker of health, innovation, and hope for the future.

Listen now and gain a fresh perspective on one of the most familiar, yet evolving parts of cystic fibrosis care.

(Vertex is a sponsor of this podcast. The Bonnell Foundation remains committed to transparent, balanced conversations that serve the CF community first.)

Additionaly we explore:

What the sweat test measures and how it’s tied to the CFTR protein (cystic fibrosis transmembrane conductance regulator).

Why sweat chloride remains important well beyond diagnosis.

How researchers use it to understand CF progression and evaluate new treatments.

What this means for families and patients living with CF every day.

This episode shares the reframing of the sweat chloride test, not as a simple number, but as a meaningful marker of health, research, and hope for the future.

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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 stories.

Pete is a tireless advocate for people living with cystic fibrosis. Diagnosed at birth, Pete has spent his life navigating the challenges of CF—while rewriting the narrative of what it means to truly thrive with a chronic, invisible illness.

Through the Filotimo Foundation, Pete has built a strong network of support for individuals and families—while breaking down the stigma surrounding conditions you can’t always see.

Whether you live with CF, love someone who does, or simply care about creating a more compassionate world, Pete’s story will inspire you.

To learn more about Pete’s Foundation: https://filotimofoundation.org

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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 emotional wellness initiatives, Deana and Liam are transforming personal challenges into meaningful change. You’ll hear how storytelling became their most powerful tool, and why their message, hope is louder, is resonating far beyond the CF community.

In this episode, we talk about:
How The Ultimate CF Family Workbook came to life
The importance of storytelling in chronic illness
Their upcoming children’s book and animated series, Liam’s Chronicles
How they’re changing the conversation around invisible illness

Learn more about their work or grab a workbook:
Available on Amazon + Etsy
Featured by hospitals like SickKids and CHEO

Connect with Deana & Liam:
FB: Facebook.com/liamsmission00
To order: http://www.liamsmission.ca
IG: Instagram.com/liamsmission

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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, books filled with dragons, magic, and faraway worlds. While CF demanded hours of treatment each day, her imagination offered something far more powerful: freedom.

“Fantasy wasn’t just fun—it was survival. In worlds of dragons and magic, I could breathe easier.” — Heather Ashle

Now, with two English degrees from Oakland University, Heather continues crafting those very stories. She writes with the hope of giving others what fantasy once gave her: wonder, empathy, and a temporary escape from the weight of reality.

You can find Heather wherever imagination thrives—on the page, on stage, at Ren Fests, or in magical corners of our community like Witches’ Bazaars. She is pure magic.

Fantasy Author of the Realm Riders Series www.heatherashle.com

• For links to Heathers author social media and where her books are available: http://www.heatherashle.com/linktree
• Publishing via HB Ink, LLC http://www.hbinkllc.com
• And https://www.facebook.com/HBInkLLC/
• Also: https://www.instagram.com/hbinkpublisher/

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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 awareness, for the CF and transplant communities every single day. You might know her from social media, where she shares her journey with honesty, humor, and heart under the handle @jencantbreathe on TikTok, Instagram, YouTube, and Facebook.

Trust me, you’re going to be inspired by this conversation.

To follow Jen: @jencantbreathe
COTA health fundraising campaign: https://cota.org/cotaforjenslungs/our-story/
The Sick Chick Hour: https://open.spotify.com/show/7eegd1SwLueAnrxueC7VVe
Youtube for Jen: https://youtube.com/@jencantbreathe?si=QXrvZniAYTwjmv2v

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Episode Notes
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.

Takeaways

Advocacy 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 quality of life.

About Leslie Baldwin
A Michigan native now living in Holt, Leslie is a rare disease advocate. She co-founding MI-RARE, a foundation uniting rare disease voices across Michigan, alongside Kayla Miller, Kathi Luis, Kortney Lee, Chris Draper, and Laura Bonnell.

Her advocacy experience is wide-ranging: she has worked with Autism Speaks, National Organization for Rare Disorders (NORD), The EveryLife Foundation, NIH, CMS, and the FDA. As Director of Strategic Advancement with Texas Rare Alliance, she helped pass key legislation that earned her national recognition as a finalist for the 2023 Rare Voice Award in State Advocacy.

On September 30th, MI-RARE will host the Michigan Rare Disease State Advocacy Day at the Capitol, a powerful opportunity for patients, families, and caregivers to share their stories with lawmakers and demonstrate that while each condition may be rare, together we are many.

To connect go to: MI-rare.org

Register for Advocacy Day opens August 4th and ends September 12th, 2025. There is a travel stipend too. Go to the MI-Rare website.

To connect with Leslie Baldwin: leslie@mi-rare.org

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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 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 unstoppable energy.

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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 fingerprinting, is a revolutionary leap forward. Developed over the past decade at Case Western’s MRI center, it’s fast, accurate, and most importantly for kids: it requires no sedation, no radiation, and no contrast agents. Each image slice takes just 15 seconds, making it safer and more accessible for the most vulnerable patients.

Dr. Flask’s work is supported by the NIH, the Cystic Fibrosis Foundation, and an extraordinary 42-year collaboration with Siemens MRI. Together, they’re paving the way for multi-center clinical trials using this technology to better understand disease progression and therapy outcomes.

This episode is all about the intersection of science, innovation, and compassion, and the powerful impact of data-driven care.

We’re honored to welcome Dr. Flask to the show, although he prefers we call him Chris. You won’t want to miss this deep dive into what’s next for pediatric imaging and precision medicine.

Share with anyone who’s passionate about medical innovation, pediatric health, or rare disease research.

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“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 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 children’s hospitals. But as larger institutions took a stronger lead in research, Julia saw a growing gap elsewhere.

“I’ve decided to devote all of Singing at the Top of My Lungs to music and creative art therapies… They are significantly underfunded, not covered by insurance, and they are often, honestly, the unsung heroes of children’s hospitals.”

Julia’s foundation now champions music and art therapies — the very programs that once transformed her own stays in sterile hospital rooms into spaces of joy and creativity. She knows firsthand that healing isn’t just about medicine — it’s also about expression, play, and being seen as more than your diagnosis.

Her own career blossomed when a YouTube performance caught the attention of a Beverly Hills record producer, leading to her single “Be That Girl” being featured in the film The Greening of Whitney Brown. She’s since performed the national anthem at major sports arenas, starred in national commercials, and most recently, in the 2024 film Playing Through. Her appearance on ABC’s Listen to Your Heart introduced her to a national audience, but she never let fame outshine her mission.

In parallel with her artistic pursuits, Julia has become a tireless advocate. She co-created and hosted Making It Matterwith the Boomer Esiason Foundation, currently leads Uncommon Lungs with Vertex Pharmaceuticals, and recently launched a podcast called A Deeper Look, spotlighting bold, thoughtful conversations with inspiring women.

Julia Rae is more than a performer, she’s a force. Her life is a testament to what happens when passion meets purpose, and when a voice refuses to be silenced by circumstance.

For the chronic illness community, and for anyone who’s ever been told “you can’t” — Julia’s story sings a different tune.

She’s not just making music. She’s making it matter.

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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 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 Holmes

It’s easy to say that exercise is one of the best things someone with CF can do. But Sophie reminds us: that doesn’t mean it’s easy. Her story is a powerful example of grit, strength, and living fully—even when the odds are stacked against you.

Sophie’s Story:
Diagnosed with cystic fibrosis at four months old

Told she might not live past her teenage years

Ran 36 marathons in 36 days, demonstrating her extraordinary endurance

Set a Lake Cuomo Ultra Ironman World Record

Believes mindset is the key to overcoming life’s toughest challenges

Works as a personal trainer and chronic illness advocate

Redefines resilience—not just surviving, but thriving

Inspires runners, athletes, and anyone living with chronic illness

Lives with relentless drive and purpose

Shows us what’s possible when you push beyond the limits others set for you

You can find Sophie Holmes on IG: https://www.instagram.com/sophiegraceholmes/

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“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 staff

The role of personal stories in driving change

The importance of staying organized and adaptable

Advice for those who can’t travel but still want to advocate

The emotional and rewarding aspects of standing up for what matters

Plus, 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. Contact: akocab@onltherapeutics.com

Harold Chase, Director of Government Affairs at NSF, discusses his journey from Senate staffer to global health policy leader. Contact: hchase@nsf.org

Thomas T. Moga, a veteran patent attorney and Fulbright Scholar, explains how intellectual property law impacts innovation. Contact: tmoga@dykema.com

Dr. Brandon McNaughton, CEO of Akadeum Life Sciences, offers insight on entrepreneurship, biotech breakthroughs, and customer-focused design. Contact: bhmcnaughton@gmail.com

Stephen Rapundalo, President of Michbio, reflects on bridging science, business, and public service. Contact: Stephen@michbio.org

This episode is a powerful reminder that advocacy takes many forms—and every voice matters.

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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 Nutritionals. A proud Alabama native, Jason earned his degree in Finance from the University of Alabama at Birmingham and spent 16 years in banking before joining MVW during a time of rapid growth. He now helps lead the multimillion-dollar, family-owned company that’s become a global leader in nutritional products for patients with CF and non-CF EPI.

In this episode, Mike and Jason share their personal stories, the importance of strong partnerships, and the real challenges patients and families are facing—especially as funding landscapes continue to shift. We explore the power of empathy, the strength of community support, and why transparency in nonprofit operations matters now more than ever.

It’s a conversation about hope, action, and what’s ahead as we work together to support those who need us most.

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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 precise, more effective, and more personalized.

Her journey began at the University of Washington and continued through specialized training at the University of Michigan, where she also earned a Master’s degree in Biostatistics and Clinical Study Design. Today, she leads research funded by the National Institutes of Health (NIH), serves on national advisory boards for the COPD Foundation and the American Lung Association, and contributes to global guidelines that shape how lung disease is diagnosed and treated.

Dr. Han also serves as Deputy Editor of the American Journal of Respiratory and Critical Care Medicine, helping to guide the direction of clinical practice and research in pulmonary medicine.

If you or someone you love is living with a chronic lung condition, Dr. Han’s insight is not only encouraging, it’s essential. I’m so grateful to bring her voice to this platform. How many breathes do we take in a lifetime? It’s fascinating to discuss and you’ll hear the answer in our podcast.

Lung health, do you think about it?
To get her book: https://www.amazon.com/Breathing-Lessons-Doctors-Guide-Health-ebook/dp/B08X2ZFGNZ/ref=tmm_kin_swatch_0

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“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 editing therapies for rare diseases. His prior leadership roles at Homology Medicines, AVROBIO, OvaScience, and Shire reflect a steady focus on advancing gene therapy and editing platforms. Since 2017 alone, he’s played a pivotal role in getting five different cell and gene therapy programs past the critical regulatory gatekeeping stages of IND and CTA submissions.

Dr. Cohn isn’t just a scientist—he’s a builder, a connector, and a relentless advocate for the potential of genetic medicine to rewrite the future for patients with rare diseases.

If you would like to get a hold of the Rosenau Foundation: https://rosenaufoundation.org

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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 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 terrific and you will hear and relate to her infectious personality. You’ll want to be her best friend!

Find out more or connect with Michelle:
Author: How To Get On Podcasts
Podcast Host: My Simplified Life
Founder and CEO: The MLG Collective

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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 University in Molecular Biology. He received his PhD in Human Genetics and MD from the University of Michigan and completed residency training in Pediatrics in the Boston Combined Pediatrics Residency Program at Boston Children’s Hospital and Boston Medical Center. He then completed fellowship training in Pediatric Pulmonology at the University of Michigan and started as faculty in 2006.

He runs a research lab focused on the health effects of obesity and the links between metabolism and lung health. The laboratory participates in both basic science and translational research projects in adult and pediatric obesity. He is funded by the NIH and the CF Foundation for new projects studying the changing causes of diabetes in people with CF.

To contact the CF pediatric department (the Bonnell girls are pictured on this page): https://www.mottchildren.org/conditions-treatments/cystic-fibrosis-pediatric?pk_vid=6ff46bd2d38fe04c1739891353f5b28b

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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 McKinnon

After 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 be more than enough for most of us, Luanne continued to pour herself into advocacy—serving as Co-chair for Stanford’s Patient and Family Advisory Committee, raising awareness for CF patients before and after transplant. In 2011, she underwent a successful double-lung transplant at Stanford, and fourteen years later, she is still very much living proof.

This episode is not about her equally remarkable husband—EMMY award-winning filmmaker Daniel Reeve—though we’ll mention him later. This is about Luanne—her life, her art, her truth, and her refusal to let a diagnosis define the limits of her possibility. She says, “I stand as a witness to the possible.”
And after listening to this conversation, I think you’ll believe in the possible, too.

Welcome, to a very special episode of the Living with cystic fibrosis podcast and our incredible guest, Luanne McKinnon.

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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 surfing. Together, they highlight the healing power of the ocean—physically, mentally, and emotionally—especially for those living with CF.

To connect with Jacob and his team: https://livefearlesslyfoundation.com

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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 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 clearance, and how community engagement plays a vital role in Tactile Medical’s approach.

This episode is full of inspiration, real-life success stories, and a look at how far we’ve come in improving comfort, mobility, and quality of life for people with CF.

To learn more about Tactile Medical please visit: https://tactilemedical.com
To learn more about AffloVest: https://affloVest.com
For questions: afflovestinfo@tactilemedical.com

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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.

Siri has a master’s degree in social Welfare, she’s fluent in Spanish, she’s great at marketing and does a lot of public speaking…and is an all-around great person.

This episode is packed with information about legislation, colon cancer, health insurance and discussion about the fact that people of color are under-diagnosed, concerns for the future of CF and catching up about our kids.

To learn more about CFRI: https://www.cfri.org

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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.com
A music production education brand:
https://recordinglikemacgyver.com
This site Aaron says is disappearing soon! https://nquit.com

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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.

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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

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