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 America.

Those years at the bedside are what ultimately led Dr. Cohen into drug development, where he has spent more than 25 years working to turn scientific innovation into real-world therapies for people who are still waiting for better options. As the Chief Medical Officer of Arcturus Therapeutics, he brings both clinical perspective and urgency to the company’s work in mRNA-based therapies for cystic fibrosis and other rare diseases.

“Clinical trials aren’t just about science, they’re about people who are willing to help move the field forward.”

In this thoughtful and engaging conversation, Dr. Cohen reflects on how cystic fibrosis care has evolved over the past 35 years, from symptom management to breakthroughs in gene therapy and mRNA technology. Dr. Cohen discusses why clinical trials are essential to progress, especially for rare diseases, and why patient participation plays such a critical role in moving new therapies forward. Dr. Cohen also shares how the strength of the CF community continues to inspire his work, offering both realism and hope for the future of CF research.

You’ll also hear more about the personal side of this wonderful scientist! The Arcturus team packed Bonnell Foundation Hospital Bags with comfort products for caregivers, and CF adults for California CF Clinics. #teamwork

Clinical trials are an important step to understand whether a medicine works for its intended purpose. Please see our active clinical trials below. For any questions email: Community@ArcturusRx.com.

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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 the same time. Both of us were in radio. I was a news reporter at WWJ, while Julie was a producer at WYCD. Even our podcast editor worked at another station in that very same building. Proof that sometimes the universe plants people in your orbit long before it tells you why.

Julie’s career path reflects both her curiosity and her compassion. She’s worked in radiology, orthopedics, and labor and delivery. She’s supported students as a paraprofessional in an elementary school and worked in a group home for adults with intellectual disabilities. Today, she works at Target—and genuinely loves it. Wherever she goes, she brings the same energy: presence, kindness, and care.

At the heart of everything Julie does is a simple but powerful mission—to spread joy. She is deeply passionate about mental health advocacy, especially within the cystic fibrosis community. And despite the very real financial strain that comes with healthcare and insurance challenges, Julie continues to show up with an unwaveringly positive spirit. Not a performative positivity—but a grounded, generous kind that makes people feel seen.

If you take just one thing from Julie today, let it be this:
You are brilliant.
You are beautiful.
And you can do anything.

(Suicide was discussed in this episode. Anyone needing help can call or text #988).

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“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 people who quietly leave a lasting mark. One of those people is Certified Child Life Specialist Abby Rose.

Abby works at Seattle Children’s Hospital, supporting both the Cystic Fibrosis program and Pediatric Hemodialysis. Originally from Wisconsin, she earned her bachelor’s degree in Psychology and Family Studies from the University of Wisconsin–Eau Claire, followed by a master’s degree in Child Life from Edgewood College.

In her role, Abby focuses on outpatient care, working closely with children and families to create individualized coping plans. She supports kids through procedures many of us take for granted—blood draws, throat swabs, vaccinations, while also helping families navigate pill swallowing, treatment tolerance, sibling support, and the everyday challenges that can feel overwhelming in CF care.

People like Abby made a profound difference for kids like one of my daughters—children who are frightened by procedures or don’t fully understand what’s about to happen to them. Child Life Specialists play a critical role in hospital settings, helping children feel safer, more informed, and more in control during some of their most vulnerable moments.

Today, I’m excited to talk with Abby about the work she does—and why it matters so deeply.

In our conversation, we’ll explore:

The Beads of Courage program and why it’s so meaningful to children and families

Why Abby is such a strong advocate for transparency, open communication, and the rights of patients and families

What draws her personally to Child Life work, and why she believes in it so deeply

And some of the “tricks of the trade”—the practical tools and techniques she uses to help kids feel calmer and more cooperative during procedures like blood draws

This is a conversation about care, trust, and the people who help make hard moments just a little bit easier.

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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 Shawn share a uniquely intertwined journey. Shawn also lives with CF and is a double lung transplant recipient, and together they navigate post-transplant life with grit, transparency, and determination. They openly share both the challenges and the victories, offering a real and unfiltered look at what it means to live, and love, through cystic fibrosis.

Through storytelling and advocacy, Sheri uplifts the CF community and supports CF-focused nonprofit organizations, drawing insight directly from lived experience. With a fascinating background in the music industry, Sheri also brings a distinctive lens to conversations about identity, judgment, and the courage it takes to show up authentically. Her story isn’t about the absence of hardship, it’s about perseverance, purpose, and choosing hope, even in the hardest moments.

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“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 truly understand. This is why I know you’re going to love my conversation with Dr. St. Onge.

Steve is the Chief Business Officer at Clarametyx. Dr. St. Onge is a PharmD and MBA with more than 15 years of experience spanning clinical care, medical affairs, and leadership in biotechnology. What stands out most about Steve isn’t just his impressive résumé, it’s his ability to clearly explain the science, the strategy, and, most importantly, the urgency behind the work Clarametyx is doing.

I first met Steve in person at the North American Cystic Fibrosis Conference (NACFC) in Seattle, where we had the opportunity to really connect and talk about Clarametyx’s approach. Their work focuses on targeting biofilm-driven inflammation and progressive lung damage, an area of significant unmet need for people living with chronic respiratory diseases, including cystic fibrosis. In this conversation, Steve breaks down what biofilms are, why they’re so difficult to treat, and how Clarametyx is thinking differently about tackling the inflammation and lung damage they cause.

We also talk about the long road of drug development, the responsibility that comes with working in rare disease, and why the phrase “patients are waiting” isn’t just a saying, it’s a call to action. This episode is an honest, accessible, and hopeful look at science in motion, and at the people behind the research who are driven by the patients counting on progress.

If you’ve ever wanted a clearer understanding of how innovative science moves from idea to impact—and why time matters so much, his is a conversation you won’t want to miss.

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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 everything she does. She often reminds others that “laughter is key,” a mindset that has helped carry her, and those around her, through the challenges of life with cystic fibrosis.

Through her work, Somer is dedicated to raising awareness, educating others, and offering hope, especially to families navigating a new CF diagnosis. In 2001, she founded Love to Breathe®, a platform created to educate, spread awareness about cystic fibrosis, and share love and connection around the world.

Big on birthdays, Somer’s parents made celebration part of her story in an unforgettable way. Every year, they placed Somer’s photo on a billboard. What began as a birthday tradition became something much bigger, raising awareness about cystic fibrosis in a way that stops people in their tracks. What that billboard did for awareness will give you chills. It’s something you will never forget. You’ll have to listen to the podcast to hear the story!

Somer knows that fighting CF isn’t something anyone can do alone. Her journey is deeply rooted in the strength of her support system and the community that stands beside her. She continues to advocate not only for her own future, but for a cure, for everyone living with cystic fibrosis.

Somer sums up the reason to advocate. This quote is on her website: “The goal isn’t to live forever, but to create something that will”-Chuck Palahniuk

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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 paperwork, often at the direct expense of patient care. Time that should be spent listening, diagnosing, and treating is instead consumed by forms, phone calls, and appeals.

Boston Globe reporter Jonathan Saltzman raised the concern and Dr. Ames brought it to my attention. The reporter talks about, a new program rolled out by Blue Cross Blue Shield of Massachusetts. The insurer says the initiative is designed to control rising healthcare costs for its 3 million members, noting that costs have increased by 30 percent since 2021. But, the program specifically targets physicians who bill for the most expensive visits. The reason for the increased expense, which is discussed in our podcast, is because doctors are choosing to spend more time with rare disease patients who have complicated health issues. They need to spend more time with complex medical needs patients than say, someone with a sore throat.

Drs. Ames and Bupp warn that this approach fundamentally misunderstands patient care, particularly for those with complex or rare conditions. “These patients don’t need less time; they need more” says Dr. Ames. Physicians argue that policies like this risk rushed appointments, strained doctor/patient relationships, and poorer outcomes. Nowhere is this more concerning than in the rare disease community, where delays and denials can be devastating.

Dr. Elizabeth Ames and Dr. Caleb Bupp talk about what this looks like in real life. As pediatric geneticists, they see firsthand how insurance barriers impact families already navigating diagnostic odysseys, uncertainty, and fear. Their work sits at the intersection of cutting-edge science and deeply human stories, and insurance interference often disrupts both. Dr. Ames, “Usually we get faxes saying, this has been denied and we start working on it. But the family gets a letter that the drug they need, the process is delayed by a “no”. We try and have good communication and say, “hey, we got this denial,” we’re working on it. But I think it’s deaths by a thousand cuts for the family. Families take the denial as, “I’m not worth of coverage, and that’s really hard”. Dr. Bupp says they have had to hire genetic counselors, a job that didn’t exist even 5 years ago, “We have a job description in our organization for it now because of the complexities that come with trying to unravel these insurance situations”.

We should also note that Dr. Ames, Dr. Bupp, and I all serve on the Rare Disease Advisory Council (RDAC) in Michigan. “I think rare disease advocacy, there is power in numbers. One person can be a huge difference maker, but it’s not one plus one equals two. It really exponentially grows, and I think with things like rare disease advisory councils, that gives you a better connection within your state, for state government and for advocacy. And I also think, or I hope, that it gives a place for an individual to plug in and that can then magnify and amplify. their voice so that they’re not alone”. Many states have RDAC’s, You can see if your state has an RDAC. For more on the Michigan RDAC

In this article and in the podcast we are not speaking on behalf of the council, but it’s important to understand why bodies like RDAC exist in the first place. Michigan is home to approximately one million people living with rare diseases, and the RDAC was created to ensure their voices, and experiences help shape policy. RDAC meetings are open to the public, and anyone in Michigan can participate and offer public comment. We hope you join our meetings via zoom (sometimes hybrid).

This conversation isn’t just about insurance policies. It’s about time, trust, and whether our healthcare system truly serves patients, especially those with the most complex needs. Speak up, share your story. Advocate. Make a difference, Mold the future, for future generations.

To look at the Everylife Diagnosis Odyssey https://everylifefoundation.org/delayed-diagnosis-study/ discussed in the podcast. Everylife impact of diagnosis: https://everylifefoundation.org/burden-study/

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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) community and beyond.

Dr. Weers is a distinguished pharmaceutical scientist with more than 35 years of experience designing and developing novel drug-delivery systems. Throughout his career, he has focused on innovative treatments for CF, working across formulations, biologics, small molecules, and combination products. His achievements include an extensive patent portfolio and a remarkable publication record, but what truly sets him apart is his ability to translate ideas into treatments that improve patient lives. I found that many scientists like Dr. Weers are soft spoken. They don’t want to brag about their scientific successes, they just want their work to speak for itself. Dr. Weers is so darn smart! He won’t toot his own horn, so I must! He’s a great person who is filled with so much hope for the future.

One of Dr. Weers’ most notable contributions is the invention of the Tobi Podhaler, a device that transformed how inhaled antibiotics reach the lungs. For people living with CF, this innovation has meant more effective, easier-to-administer treatment, significantly improving daily quality of life. His work exemplifies the power of scientific innovation to directly impact patient care.

Dr. Weers delves into both the breakthroughs and the challenges of drug development. He shares insights into the ongoing hurdles of developing inhaled medications, including inhaled insulin, and emphasizes the regulatory obstacles that can slow the introduction of new anti-infectives. Yet, he remains optimistic about the future, highlighting the role of collaboration among scientists and the potential of AI to enhance medical imaging, diagnosis, and patient outcomes.

Dr. Weers also stresses the critical importance of addressing infectious diseases in CF patients and the responsibility of the scientific community to advocate for better treatments. Beyond his professional achievements, he reflects on the personal side of being a lifelong scientist, sharing how interests like farming provide balance and perspective in a demanding career.

I particularly loved recording this episode because Dr. Weers has a rare ability to make complex science accessible, explaining the “why” behind innovations in a way anyone can understand. For anyone curious about the intersection of science, medicine, and human impact, this conversation is both enlightening and inspiring.

To watch a fabulous video that explains the creation of what it takes to get medicine into the lungs, view here: You Tube link: https://www.youtube.com/watch?v=fwglM8Zo4m0

Inhaled drug delivery in CF/ YouTube link: https://youtu.be/iV27VdieQbo

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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 could do.

But in high school, everything shifted. Daelyn made the brave decision to stop running from her diagnosis and start embracing it as part of who she is. And that choice changed her life.

Now 25, she proudly lives with CF and uses her experiences to raise awareness, connect with others, and offer hope. Her message is simple but powerful: even in the hardest moments, there is strength, there is goodness, and there is always a way forward.

I’m so excited for you to hear her story.

To connect with Daelyn visit her on IG: https://www.instagram.com/daelyn_j/
To connect with Somer Love her IG is Love to Breath: https://www.instagram.com/lovetobreathe/

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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 walking in charity events or asking friends and family to donate wasn’t enough. Love demanded action. Hope demanded movement.

He wanted to do more. He wanted to be part of the generation that finds the cure. It’s his motto.

In 2017, Chad’s heart broke when one of his nieces lost her courageous fight with CF. But even in grief, he found his purpose. He made a promise to her, and to his living niece, and to every person living with CF, that he would keep running toward a cure.

Now, Chad isn’t running for a medal. He’s running for time. Time for those who can’t breathe freely. Time for families waiting on a cure. Time for the breakthroughs that can change everything.

His mission has taken shape in an extraordinary endurance challenge: running 6.5 miles every 6.5 hours for 65 straight hours , all to raise $65,000 for cystic fibrosis research.

This is not a race. It’s a test of heart, exhaustion, and purpose, run one step, one story, one promise at a time.

Already, more than 80 donors have stepped forward, contributing over $11,000 to support Chad’s mission. But this is no longer just a personal challenge, t’s a movement.

Through a short documentary film, that movement, and its heartbeat, will be captured forever.

For everyone still fighting for breath, Chad runs because every moment counts. And he won’t stop until cystic fibrosis is a disease of the past.

For more information and to donate: https://fundraise.cff.org/roseup2025/65milesin65hoursforCF

To see the trailer for Generation: Cure: https://youtu.be/fj05qbISrQc?si=OOJ5D6vX0DWhAILF

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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 Alamos, New Mexico, an environment steeped in scientific discovery. Summers interning at Los Alamos National Laboratory sparked his early fascination with how innovation can change lives.

At Yale, he explored the intersection of engineering and art, studying biomedical engineering alongside art history to understand both the precision of science and the elegance of design. But it was a research trip to the Arctic University of Norway that set his path in motion. While building mathematical models of antibiotic resistance, a challenge many people with cystic fibrosis face, Colin discovered his true calling.

Today, he’s a PhD student in Dr. David R. Liu’s renowned laboratory at Harvard, working at the cutting edge of gene editing for cystic fibrosis. Every day, Colin is pushing boundaries, imagining a future where science doesn’t just treat CF but has the power to rewrite its story.

We had to so much fun talking in this podcast. Born in France we talk about Colin’s wonderful siblings and parents. They’re all incredibly smart and making a huge difference in our world.

Outside the lab, Colin reflected on the grounding role of art, music, and outdoor exploration, coping mechanisms that keep him connected to the world he’s trying to impact. Looking ahead, he’s both hopeful and driven: gene editing for cystic fibrosis is no longer a distant dream but a rapidly approaching reality with global implications. His aspirations are bold, but so is the science.

In his view, the future of CF research depends on collaboration, imagination, and staying rooted in why the work matters: to bring healthier, longer lives within reach for every person living with this disease. We sure love his passion for science. You won’t want to miss this Amazing Podcast.

To watch Colin’s PhD https://drive.google.com/file/d/1HizIGiqGdKDgIifT7HF9t0UDVgv0tOKE/view

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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 authors of the Human Genome Project, and his longtime friend Dr. Mitch Drumm, who was working on his doctorate when the CF gene was discovered back in 1989.

I actually saw Mitch recently at a dinner, and as many of you know, Dr. Collins continues to be a tireless advocate for good science and for sharing its importance with the world.

And now, we add another legend to that list: Dr. Michael Welsh from the University of Iowa.

Dr. Welsh tells his story beautifully in the University’s film Breath by Breath: Living with Cystic Fibrosis. In it, he describes how his curiosity about the CFTR protein led to groundbreaking discoveries that ultimately laid the foundation for CF therapies, the very treatments that have changed (and saved) thousands of lives, including the lives of my daughters.

Dr. Welsh’s career is extraordinary, spanning decades of research, mentorship, and discovery. He’s the Carver Professor of Internal Medicine and Molecular Physiology and Biophysics at the University of Iowa, and from 1989 to 2024, he served as an Investigator with the Howard Hughes Medical Institute. He currently directs both the Pappajohn Biomedical Institute and the Cystic Fibrosis Research Center.

We’ve linked both his full bio and the film in the show notes, and I highly encourage you to check them out. His accolades could fill pages, actually, an entire book! We had so many laughs too in this podcast! So much fun. You’ll really enjoy it.

Dr. Welsh shared insights not only into his scientific journey, but also the heart behind the work. He recently received the Lasker Award for pioneering CF research that led to life-saving therapies, a recognition that celebrates decades of persistence, curiosity, and collaboration.

We discussed so much:

• How his team began unraveling the mystery of the CFTR protein and what that breakthrough moment felt like
• What it’s like to see patients thriving because of the treatments that grew from that work
• Why the University of Iowa decided to produce Breath by Breath, and what the film means to him personally
• What new treatments and discoveries he’s exploring now

Hearing Dr. Welsh describe the intersection of science, hope, and humanity is powerful. You can tell that for him, this work isn’t just research, it’s a mission.

As the documentary shows, CF isn’t just a disease studied under a microscope. It’s a lived experience for patients and families, one that now includes real hope thanks to the breakthroughs made by scientists like Dr. Michael Welsh.

Biography:

Dr. Michael Welsh is the Carver Professor of Internal Medicine and Molecular Physiology and
Biophysics at the University of Iowa. From 1989-2024, he was an Investigator of the Howard

Hughes Medical Institute. He directs the Pappajohn Biomedical Institute and the Cystic Fibrosis
Research Center.

Dr. Welsh obtained an MD and completed an internal medicine residency at the University of
Iowa. He then trained in pulmonary medicine and research at the University of California, San

Francisco and physiology at the University of Texas, Houston.

Dr. Welsh and his colleagues discovered that the protein affected in cystic fibrosis is an anion
channel, elucidated its functional mechanisms, discovered ways that mutations disrupt function,
and showed that mutations can be rescued. This work led directly to development of medicines
that target CFTR and are highly effective for most cystic fibrosis patients. To understand disease
pathogenesis, he and his collaborators developed cystic fibrosis pigs, the first mammal, other
than mice, in which a gene was targeted to generate a disease model.

His clinical activities focused on pulmonary diseases. He has trained many physicians and
scientists and received the Distinguished Mentor Award, University of Iowa Carver College of
Medicine.

To watch the film, click here: https://uihealthcare.org/cystic-fibrosis-research-iowa#documentary
To learn more about Dr. Welsh: https://internalmedicine.medicine.uiowa.edu/profile/michael-welsh

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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.

Update State CF Center (Syracuse, NY) Social Worker Lejla Bush, who has worked with the CF community for over a decade, shares how Amish and Mennonite families navigate CF while staying true to their traditions. She explains the unique challenges, from financial hurdles without health insurance, to hospital care that must adapt to cultural practices, and the vital role of community support in helping families face this disease.

Most importantly, Lejla reminds us that while the cultural context is different, Amish and Mennonite parents hold the same hopes, fears, and love for their children as any other family affected by CF.

This episode opens a window into the powerful intersection of culture, medicine, and resilience.

We did a Q and A with some people in the Amish and Mennonite communities. Thanks to Lejla for sharing so much information about the Amish and Mennonite communities.

To see a letter of Q and A with one of the Amish patients click here: https://thebonnellfoundation.org/wp-content/uploads/2025/09/AmishLetter.jpg

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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 with cystic fibrosis (CF). What started as a family connection to CF grew into a calling that now spans continents.

Today, Summer serves as a key volunteer for CF Vest Worldwide, a nonprofit that provides life-changing airway clearance vests to people with CF who can’t afford them. Her days are filled with cleaning, sorting, and shipping donated vests to families across the globe, and sometimes, personally delivering them.

From India to Colombia to Ecuador, Summer has met families whose gratitude reminds her daily why this work matters. She shares powerful, heartwarming moments, like watching a child take easier breaths for the first time, and the challenges of navigating logistics, language barriers, and limited resources.

Next up? Honduras, where Summer delivers 10 vests to families in need.

Balancing her large family and international volunteer work hasn’t been easy, but Summer says her experiences at home prepared her for the organizational and emotional demands of this mission. Her story is a reminder that one person — one family — can make a global difference.

This episode shines a light on the power of community, family support, and the ripple effect of kindness.

If you’d like to support Summer’s efforts, CF Vest Worldwide is currently accepting donations of child-sized garmentsused to distribute vests to children with CF around the world.

What’s her connection? Her why? It’s her brother, Josh Bauder.

To see more about Summer’s work, watch her video: https://youtu.be/sHSB9kIp060
To contact CFVWW: rod@cfvww.org

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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 the 1970s with cystic fibrosis, a time when the disease was still cloaked in uncertainty and fear. Few children with CF lived to see adulthood, and the treatments that exist today were still decades away. From the very beginning, every breath she took was a small act of defiance. Hospital rooms became her playgrounds, IV poles her silent companions, and the steady rhythm of nebulizers the soundtrack of her childhood.

But even in those sterile rooms filled with machines and medicine, Jennifer’s spirit burned bright. She refused to let CF define her — or defeat her. Through endless hospital stays, setbacks, and the exhausting daily grind of treatments, she found reasons to laugh, to dream, and to keep fighting. Every milestone, every birthday, every deep breath, became a victory.

Then came 2019, a year that would rewrite her story once again. With the arrival of Trikafta, the groundbreaking CF modulator, Jennifer’s world shifted. Suddenly, life felt lighter — her lungs stronger, her body more capable. For the first time, she could picture a future not limited by her disease but expanded by possibility. She could plan, imagine, and live, truly live, in ways she once only dreamed of.

Yet Jennifer’s story isn’t just about survival; it’s about transformation. Rather than turning inward, she turned outward — channeling her strength into action. She’s raised over a million dollars for cystic fibrosis research, driven by the belief that every dollar brings us closer to a cure. She became a mother to twins through the extraordinary gift of her sister, proving that family and love can find a way even when the odds seem impossible.

Today, Jennifer stands as a single mom, a tireless advocate, and the voice behind Just One More Breath, a platform dedicated to raising awareness, sharing stories, and inspiring others to keep pushing forward … one breath at a time.

Her journey is a powerful reminder that life with cystic fibrosis is unpredictable, yes, but it is also breathtakingly beautiful. It’s a life lived with intention, courage, and grace. Jennifer’s story teaches us that even when the odds seem insurmountable, resilience can turn pain into purpose, and hope can carry you through the darkest storms.

Because for Jennifer, every breath is more than survival.
It’s a celebration of strength, of love, and of the limitless power of the human spirit.

Jennifer on IG: https://www.instagram.com/just.onemorebreath/?hl=en
Website: https://jennifer-mckinnon.com/?

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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.

Please like, subscribe, and comment on our podcasts!
Please consider making a donation: https://thebonnellfoundation.org/donate/
The Bonnell Foundation website: https://thebonnellfoundation.org
Email us at: thebonnellfoundation@gmail.com
Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featured

Thanks to our sponsors:
Vertex: https://www.vrtx.com
Viatris: https://www.viatris.com/en

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.

Please like, subscribe, and comment on our podcasts!
Please consider making a donation: https://thebonnellfoundation.org/donate/
The Bonnell Foundation website: https://thebonnellfoundation.org
Email us at: thebonnellfoundation@gmail.com
Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featured

Thanks to our sponsors:
Vertex: https://www.vrtx.com
Viatris: https://www.viatris.com/en