Living With Cystic Fibrosis

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 Please like, subscribe, and comment on our podcasts!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featuredThanks to our sponsors:Vertex: https://www.vrtx.comViatris:  https://www.viatris.com/en

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/sHSB9kIp060To contact CFVWW: rod@cfvww.org Please like, subscribe, and comment on our podcasts!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featuredThanks to our sponsors:Vertex: https://www.vrtx.comViatris:  https://www.viatris.com/en

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=enWebsite: https://jennifer-mckinnon.com/?  Please like, subscribe, and comment on our podcasts!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featuredThanks to our sponsors:Vertex: https://www.vrtx.comViatris:  https://www.viatris.com/en

The Triple Threat to the Rare Disease Ecosystem — A Conversation with Dr. Wendy ChungSometimes 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. Please like, subscribe, and comment on our podcasts!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featuredThanks to our sponsors:Vertex: https://www.vrtx.comViatris:  https://www.viatris.com/en

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. Please like, subscribe, and comment on our podcasts!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featuredThanks to our sponsors:Vertex: https://www.vrtx.comViatris:  https://www.viatris.com/en

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. Please like, subscribe, and comment on our podcasts!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featuredThanks to our sponsors:Vertex: https://www.vrtx.comViatris:  https://www.viatris.com/en

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  Please like, subscribe, and comment on our podcasts!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featuredThanks to our sponsors:Vertex: https://www.vrtx.comViatris:  https://www.viatris.com/en

Turning Diagnosis into Purpose: Deana and Liam’s MissionWhen 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 lifeThe importance of storytelling in chronic illnessTheir upcoming children's book and animated series, Liam’s ChroniclesHow they’re changing the conversation around invisible illnessLearn more about their work or grab a workbook: [Insert Website or Linktree]Available on Amazon + EtsyFeatured by hospitals like SickKids and CHEOConnect with Deana & Liam:FB: Facebook.com/liamsmission00To order: www.liamsmission.ca IG: Instagram.com/liamsmission Please like, subscribe, and comment on our podcasts!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featuredThanks to our sponsors:Vertex: https://www.vrtx.comViatris:  https://www.viatris.com/en

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 AshleNow, 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.comFor links to Heathers author social media and where her books are available: www.heatherashle.com/linktree Publishing via HB Ink, LLC www.hbinkllc.com  And https://www.facebook.com/HBInkLLC/Also: https://www.instagram.com/hbinkpublisher/ Please like, subscribe, and comment on our podcasts!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featuredThanks to our sponsors:Vertex: https://www.vrtx.comViatris:  https://www.viatris.com/en

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: @jencantbreatheCOTA health fundraising campaign: https://cota.org/cotaforjenslungs/our-story/The Sick Chick Hour: https://open.spotify.com/show/7eegd1SwLueAnrxueC7VVeYoutube for Jen: https://youtube.com/@jencantbreathe?si=QXrvZniAYTwjmv2v     Please like, subscribe, and comment on our podcasts!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featuredThanks to our sponsors:Vertex: https://www.vrtx.comViatris:  https://www.viatris.com/en

The challenges and triumphs of living with a rare disease. Leslie Baldwin shares her personal journey with Common Variable Immune Deficiency and Ehlers-Danlos Syndrome. You'll hear what fueled her passion for advocacy and the creation of Michigan Rare (MI-RARE). Together, they discuss the power of community, the importance of patient empowerment, and how collaboration with policymakers can expand access and resources for those living with rare conditions.TakeawaysAdvocacy is essential for the rare disease community.Building connections provides vital support.Patients should feel empowered to speak up for their health.Collaboration with policymakers can drive positive change.Storytelling inspires and unites the community.Engagement raises awareness and strengthens support networks.Advocacy days introduce rare disease issues to lawmakers.Recognizing unique challenges leads to better understanding.Coalitions amplify the collective voice of rare disease advocates.Empowering patients and caregivers enhances quality of life.About Leslie BaldwinA 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 Please like, subscribe, and comment on our podcasts!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featuredThanks to our sponsors:Vertex: https://www.vrtx.comViatris:  https://www.viatris.com/en

Miss America 2025 Abbie Stockard: A Champion for Kids, Health, and Cystic FibrosisAbbie Stockard, Miss America 2025, joins us to share her incredible journey, from Auburn University nursing student and Tiger Paws dancer to national advocate and role model. At just 22, Abbie has earned over $89,000 in scholarships through the Miss America Opportunity and is using her platform to promote pediatric health, women’s leadership, and awareness for cystic fibrosis (CF).Inspired by her best friend Maddie, Abbie has raised over $200,000 for CF research and was honored as the Cystic Fibrosis Foundation’s “2024 Hero of Hope.” She also created High Five for Kids, a wellness program that empowers children—including those with chronic illnesses, to build healthy habits for life.In this episode, Abbie talks about balancing school, service, and advocacy, and how she’s using her voice to drive real change in healthcare and beyond. Don’t miss this inspiring conversation with a young woman leading with heart, purpose, and unstoppable energy. Please like, subscribe, and comment on our podcasts!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featuredThanks to our sponsors:Vertex: https://www.vrtx.comViatris:  https://www.viatris.com/en

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. Please like, subscribe, and comment on our podcasts!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featuredThanks to our sponsors:Vertex: https://www.vrtx.comViatris:  https://www.viatris.com/en

“I always say that singing and performing was as much a part of my DNA as cystic fibrosis.” Julia RaeFrom the moment Julia Rae could speak, she was singing, and from the moment she could dream, she was already imagining a bigger stage. As her mother fondly recalls, at just two years old, Julia was watching Barney on TV and asked, “How do I get in there and do that with him?” That instinct, that pull toward performance, was never just about the spotlight. For Julia Rae, the stage became her sanctuary, and later, her platform for purpose.Diagnosed with cystic fibrosis at birth, Julia’s life has never followed an easy script. But instead of letting a chronic illness limit her, she embraced the full range of her voice, as a singer, actress, writer, and advocate. She didn’t just want to perform; she wanted to make a difference.At 16, Julia founded Singing at the Top of My Lungs, a nonprofit inspired by her own hospital experiences. Initially, the organization supported both CF research and creative therapies at 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. Please like, subscribe, and comment on our podcasts!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featuredThanks to our sponsors:Vertex: https://www.vrtx.comViatris:  https://www.viatris.com/en

Never Just Surviving: Sophie Holmes on Running 36 Marathons with Cystic FibrosisDespite a schedule packed with training, advocacy, and breaking world records, Sophie Holmes of the U.K. always makes time to share her story, and we’re so grateful she did.Diagnosed with cystic fibrosis at just four months old, Sophie was told she might not live past her teens. But rather than letting that define her, she’s spent her life rewriting the narrative. Her latest, jaw-dropping accomplishment? Running 36 marathons in 36 days. That’s right—36 consecutive days, 26.2 miles each day, driven by pure determination and an unshakable belief in what’s possible.Sophie is not only an elite athlete and personal trainer, she’s a powerful advocate for chronic illness awareness. In this episode of the Living with Cystic Fibrosis podcast, she talks about what fueled her through each grueling mile, how she manages the intense physical demands of endurance sports while living with CF.“Mindset is everything.” – Sophie HolmesIt’s easy to 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 oldTold she might not live past her teenage yearsRan 36 marathons in 36 days, demonstrating her extraordinary enduranceSet a Lake Cuomo Ultra Ironman World RecordBelieves mindset is the key to overcoming life’s toughest challengesWorks as a personal trainer and chronic illness advocateRedefines resilience—not just surviving, but thrivingInspires runners, athletes, and anyone living with chronic illnessLives with relentless drive and purposeShows us what’s possible when you push beyond the limits others set for youYou can find Sophie Holmes on IG: https://www.instagram.com/sophiegraceholmes/ Please like, subscribe, and comment on our podcasts!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featuredThanks to our sponsors:Vertex: https://www.vrtx.comViatris:  https://www.viatris.com/en

 “It’s an honor to be an advocate,” says Laura Bonnell, founder of The Bonnell Foundation. “We are the government—people are. If we don’t fight for fair laws that help the people they’re meant to serve, who will?”In this episode, Laura is joined by five passionate advocates—some seasoned, some new—who recently traveled to Washington, DC, to meet with lawmakers. Together, they share their personal experiences, insights on advocacy, and why storytelling and persistence matter in influencing policy.The conversation highlights:How to build relationships with legislative staffThe role of personal stories in driving changeThe importance of staying organized and adaptableAdvice for those who can’t travel but still want to advocateThe emotional and rewarding aspects of standing up for what mattersPlus, we're joined by a lineup of experts working at the intersection of science, innovation, and policy:Dr. Andy Kocab, VP of Research at ONL Therapeutics, shares how biotech is advancing treatments for retinal diseases. Contact: akocab@onltherapeutics.comHarold Chase, Director of Government Affairs at NSF, discusses his journey from Senate staffer to global health policy leader. Contact: hchase@nsf.orgThomas T. Moga, a veteran patent attorney and Fulbright Scholar, explains how intellectual property law impacts innovation. Contact: tmoga@dykema.comDr. Brandon McNaughton, CEO of Akadeum Life Sciences, offers insight on entrepreneurship, biotech breakthroughs, and customer-focused design. Contact: bhmcnaughton@gmail.comStephen Rapundalo, President of Michbio, reflects on bridging science, business, and public service. Contact: Stephen@michbio.orgThis 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.orgEmail us at: thebonnellfoundation@gmail.com Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featuredThanks to our sponsors:Vertex: https://www.vrtx.comViatris:  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.orgEmail us at: thebonnellfoundation@gmail.com Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featuredThanks to our sponsors:Vertex: https://www.vrtx.comViatris:  https://www.viatris.com/en

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 Please like, subscribe, and comment on our podcasts!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featuredThanks to our sponsors:Vertex: https://www.vrtx.comViatris:  https://www.viatris.com/en

"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 Please like, subscribe, and comment on our podcasts!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featuredThanks to our sponsors:Vertex: https://www.vrtx.comViatris:  https://www.viatris.com/en

From Costco to Connection: Podcast Advice That Changed EverythingWhen I spotted a feature on podcasting in The Costco Connection, I was excited. When I saw Michelle Glogovac featured? I knew I had to reach out. That decision turned into one of the best moves I’ve made for growing my podcast.Michelle,  THE Podcast Matchmaker®, publicist, and author of How To Get On Podcasts, shared simple, powerful strategies that helped expand my reach. One standout? Getting featured on other podcasts. It boosted my visibility, brought in new listeners, and gave me fresh insights into how other hosts run their shows.In this episode, Michelle shares her approach to storytelling, visibility, and the importance of showing up. Her message: Your story is your superpower.If you want to grow your platform and connect with more listeners, don’t miss this one.“Your story is your superpower. The more you share it, the more people you help—and the more you grow in the process.”— Michelle Glogovac,The Podcast Matchmaker®. Michelle is 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 LifeFounder and CEO: The MLG Collective  Please like, subscribe, and comment on our podcasts!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featuredThanks to our sponsors:Vertex: https://www.vrtx.comViatris:  https://www.viatris.com/en