Autosomal recessive disease mostly affecting the lungs
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"Ever moment, every day is worth celebrating." Somer LoveSomer 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 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/enRead us on Substack: https://substack.com/@lstb?utm_campaign=profile&utm_medium=profile-pageWatch our trailer of Embracing Egypt: https://youtu.be/RYjlB25Cr9Y
On this episode of The Mark White Show, I sit down with Coleman Drew, who was diagnosed with cystic fibrosis at just two years old. For most of his life, Coleman has faced daily treatments, hospital stays, and the quiet strength required to manage a chronic illness. Now, transplant has entered the conversation, and his family has partnered with COTA, the Children's Organ Transplant Association, to help with transplant-related expenses. This is not just a story about illness. It's a story about perseverance, faith, family, & the power of community support. Join us as Coleman shares what it has been like to grow up with CF, what this season looks like, & how you can stand with him in the fight. Learn how to support Coleman at: https://cota.org/cotaforcolemansfight/
Out of the Question Podcast: Uncovering the Question Behind the Question
95% of parents abort their unborn children for Cystic Fibrosis, but here's one of the 5%: she wasn't aborted and used her faith to turn adversity into hope, purpose, athletic excellence and a devotion to Christ.
When Insurance Gets Between Doctors and PatientsDr. 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 RDACIn 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/ 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/enRead us on Substack: https://substack.com/@lstb?utm_campaign=profile&utm_medium=profile-pageWatch our trailer of Embracing Egypt: https://youtu.be/RYjlB25Cr9Y
Good morning from Pharma Daily: the podcast that brings you the most important developments in the pharmaceutical and biotech world. Today, we delve into a series of significant events shaping the landscape of drug development, regulatory scrutiny, and industry advancement. As we navigate this complex terrain, we'll explore how these changes impact both companies and patients.In recent news, Moderna has encountered a substantial hurdle as the FDA declined to review its flu vaccine candidate, mRNA-1010. This decision marks a notable shift from the expedited processes witnessed during the COVID-19 pandemic, reflecting a more cautious regulatory approach under current administrative leadership. Analysts suggest this could indicate broader regulatory changes that might affect future vaccine approvals. Moderna's situation is emblematic of the challenges companies face in maintaining momentum post-pandemic, especially as their research and development spending saw a significant decrease of 31% last year due to completed respiratory trials. This reduction highlights a strategic pivot as the company reassesses its priorities amidst an evolving market landscape.Vertex Pharmaceuticals is making headlines with its ambitious revenue goals outside its established cystic fibrosis franchise. By 2026, Vertex aims to generate $500 million from non-CF medications, with recent launches like Casgevy and Journavx already showing promise by collectively bringing in $175.6 million last year. This diversification strategy is critical for mitigating risks associated with dependence on a single therapeutic area and reflects a broader industry trend towards strategic realignment. Additionally, Vertex remains under close observation within kidney disease portfolios, particularly with Povetacicept—an IgA nephropathy treatment—and the success of Journavx impacting market positions by offering chronic kidney disease patients new therapeutic options.PTC Therapeutics has faced setbacks with its FDA application withdrawal for Translarna, intended for treating nonsense mutation Duchenne muscular dystrophy. The decision came after receiving adverse feedback from the FDA, highlighting the complexities involved in gaining approval for therapies targeting intricate genetic conditions. Such hurdles underscore the high-risk nature of biotech ventures that are heavily reliant on regulatory timelines.Novartis is pushing forward with plans to seek full FDA approval for Vanrafia, its IgA nephropathy drug, despite not meeting primary kidney function goals in Phase 3 trials. This move aligns with a growing trend where companies pursue approval based on secondary endpoints or other supportive data when primary outcomes fall short. Such strategies underscore the competitive and high-stakes environment surrounding drug approval pathways.Novo Nordisk is expanding its production capabilities in Ireland to meet increasing demand for Wegovy, their obesity drug that's seen impressive sales in the U.S. This investment underscores the global potential for obesity treatments and highlights how manufacturing expansions are pivotal to supporting international market entry.In Europe, Amgen has secured approval for Uplizna in treating myasthenia gravis, adding another option to an already crowded treatment landscape but offering patients additional therapeutic choices. Meanwhile, AbbVie has launched a legal challenge against Botox's inclusion in drug pricing negotiations under the Inflation Reduction Act (IRA), arguing it should be excluded due to its plasma-derived nature.Ultragenyx has announced a 10% workforce reduction amid halted gene therapy plans and unsuccessful late-stage trials in brittle bone disease. These adjustments often reflect broader strategic shifts within biopharma companies as they realign focus and resources. Ultragenyx's operational challenges highlight the volatile nature of biotech ventureSupport the show
In this episode of the Clinical Research Coach, I sit down with Ella Balasa, a cystic fibrosis patient advocate whose lived experience is shaping how our industry understands trust, transparency, and meaningful patient engagement.Diagnosed in infancy with cystic fibrosis, a progressive genetic lung disease, Ella has spent her life navigating hospital systems, breakthrough therapies, and clinical trials — not as an abstract participant, but as someone whose health and future depend on research progress. Along the way, she has become a powerful voice for improving how industry partners with patients.In this conversation, Ella shares what sponsors, sites, and biotech leaders often overlook:* Patient experience is never one-size-fits-all — even within the same diagnosis.* Patients learn about trials through trusted networks, not just databases or digital ads.* Transparency builds confidence and drives long-term participation in research.* Dropout affects more than timelines — it influences trust and future enrollment decisions.* Technology should support patients, but never replace human connection.Ella's perspective challenges us to think beyond enrollment metrics and toward something deeper: relational trust. Because sustainable progress in clinical research depends on listening to patients as individuals, partners, and experts in their own lives.To learn more about Ella:Https:/ellabalasa.com
Innovating Medicine: How Science, Collaboration, and Curiosity Transform Patient CareIt 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=fwglM8Zo4m0Inhaled drug delivery in CF/ YouTube link: nother YouTube link: https://youtu.be/iV27VdieQbo 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
Send us a textJoin Alex Rutledge and Red Bone for an in-depth exploration of the National Wild Turkey Federation (NWTF) - America's greatest conservation success story. In this special episode, we dive into the fascinating history of how one man's vision in 1972 transformed wild turkey populations from near extinction to thriving across all 50 states.We discuss the upcoming NWTF National Convention in Nashville, featuring over 80,000 attendees, celebrity appearances including Craig Morgan, and the historic 50th anniversary exhibit. Plus, we share personal turkey hunting stories, discuss current weather impacts on wildlife, cover local sports updates, and wrap up with delicious wild turkey recipes you can try at home.Whether you're a seasoned turkey hunter or just curious about conservation, this episode celebrates the heritage, community, and passion that makes turkey hunting a cherished American tradition.Chapter Markers:[0:00] Introduction & Weather UpdateSnow and ice conditions in the OzarksSafety reminders for winter weatherMDC tree stand regulations and spring turkey hunt applications[7:30] Current Events: Sports RoundupHigh school basketball updates (Liberty, Van Buren, Bunker Eagles)College basketball highlights and faith testimoniesNFL playoff predictions and Super Bowl preview[15:45] Craig Morgan Concert AnnouncementMarch 21st Cystic Fibrosis fundraiser at West Plains Civic CenterTicket information and Craig Morgan's military promotion[18:20] NWTF National Convention PreviewNashville convention details (February)80,000+ attendees expectedHistoric 50th anniversary exhibitCelebrity appearances and Grand National Turkey Calling Competition[22:15] The Beginning: NWTF History (Part 1)Wild turkey population crisis (1.3 million birds in 1972)Federal legislation: Lacy Act, Migratory Bird Treaty Act, Pittman-Robertson ActCannon net technology revolutionTom Rogers' vision for a national organization[32:40] The Founding: NWTF History (Part 2)Tom Rogers meets key supporters (Frank Piper, Jerry Ones, John Lewis)March 28, 1973: NWTF chartered in Fredericksburg, VirginiaMove to Edgefield, South Carolina with "$10,000 and a cigar box of membership cards"First headquarters established[40:25] NWTF Impact & MissionResearch and conservation effortsDisease prevention and wildlife managementImportance of membership and chapter involvementCurrent River Callers chapter raises over $40,000[48:50] Personal Stories & Convention ExperienceAlex's introduction to NWTF in 1981 by Glen CadeHistory of turkey calling evolutionWhy families should attend the Nashville conventionMeeting celebrities and professional hunters[56:30] Conservation PhilosophyGetting kids involved in the outdoorsEthical hunting and land stewardshipSupporting NRA, Sportsman's Alliance, and conservation organizationsPassing heritage to future generations[1:02:15] Bonus Segment: Wild Turkey RecipesRed Bone's smoked turkey breast technique (with moisture pan method)Alex's turkey nuggets with buttermilk marinadeTurkey salad sandwich spread from dark meatTips for using the entire bird[1:08:30] Closing ThoughtsTurkey hunting camp opportunities in Ohio, Missouri, and AlabamaFinal message: "Love one another, teach your boys to become men, teach your girls to become ladies"
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/ 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
Running for Time: Chad Eddy's Mission Against Cystic FibrosisFor 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/YyI_rNXuNAI?si=pk_tBY3NZkdtdfTn 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
Very young children with cystic fibrosis could soon access funded medicines with the potential to add decades to their lives. Christchurch couple Edward and Emily Harrington-Ashton's 20 month-old- son, Noah, has cystic fibrosis. They say the drug will be life changing for their son. Edward spoke to Lauren Crimp.
Families of young children with cystic fibrosis are celebrating a Pharmac proposal to widen access to the drug Trikafta, which is out for consultation. It's been funded for children over 6 since 2023, but the agency's now proposing extending it to under-sixes. Liam Rooney's child has cystic fibrosis and he says his family was looking for other ways to get it. "I'd already spoken to my boss over in Australia about the potential for us to move over if things got worse." LISTEN ABOVESee omnystudio.com/listener for privacy information.
When Jennifer joined New Hope in 2018, she didn't just take a job — she stepped into a calling. What began as a role coordinating outreach and events quickly became a mission to change how communities understand and support grief. With her compassion, creativity, and drive, Jennifer helped New Hope grow from a local resource into a lifeline for families across the region. Her leadership was soon undeniable — first as Interim Executive Director, then officially taking the helm in January 2020 — guiding New Hope through seasons of transformation, expansion, and profound impact.Under Jennifer's direction, New Hope has launched new loss-specific grief groups, expanded programming, and reached grievers in more communities than ever before. She continues to build on her expertise through national training with the National Alliance for Children's Grief and other organizations, ensuring that every program New Hope offers is trauma-informed, compassionate, and deeply effective.Jennifer's community involvement runs wide and deep — she serves on multiple local health and wellness councils, partners with school districts, and facilitates leadership and family development programs, includingThe Leader in MeandThe 7 Habits of Highly Successful Families. She's also been invited to speak and moderate at events like Hegira Health'sFocus on Zerosuicide prevention conference, sharing insights on resilience and healing.Today, Jennifer not only leads New Hope but helps train other organizations on how to support those in grief. She's currently helping design age-specific grief curriculum for students — empowering young people to understand loss, express emotion, and find hope. She's seen the full circle of healing firsthand: those once supported by New Hope returning to offer that same compassion to others, creating a community where no one grieves alone. 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
In this final deep dive episode, Stuart Elborn turns to healthcare systems and policy. He discusses the importance of registries, data sharing, and service organisation, alongside social and funding factors that shape equitable cystic fibrosis care, ending with a global vision for cystic fibrosis management over the next decade. Timestamps: 00:00 – Introduction 01:08 – Healthcare delivery 03:33 – National registries 05:04 – New challenges 06:35 – Equitable care 08:51 – Regional initiatives 10:40 – What's next?
In this second deep dive episode, Stuart Elborn explores the future landscape of cystic fibrosis treatment beyond modulators. From mRNA and gene editing to inhaled therapies and phenotype-driven care, this episode examines how close we are to truly personalised medicine in cystic fibrosis. Timestamps: 00:00 – Introduction 01:22 – Treatment gaps 03:13 – Extrapulmonary complications 04:14 – Novel therapies 06:04 – Delivery routes 07:33 – Personalised medicine
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 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
In this first deep dive, Stuart Elborn reflects on the major scientific breakthroughs of his career, and how laboratory discoveries have transformed cystic fibrosis care. He discusses lessons from pivotal CTFR modulator trials, the role of consensus guidelines, and the challenges of caring for an ageing cystic fibrosis population.
Stuart Elborn joins the EMJ Podcast for a quickfire discussion on modern cystic fibrosis care. From CFTR modulators to antimicrobial resistance and personalised medicine, he shares concise insights into the biggest shifts shaping cystic fibrosis outcomes today.
This week’s Pulm PEEPs Pearls episode is a focused discussion between Furf and Monty about non-pharmacologic techniques for airway clearance in the non-Cystic Fibrosis bronchiectasis population. This is a focused, high-yield discussion of the key points about airway clearance, including practical tips and a discussion of the evidence. This episode was prepared in conjunction with George Doumat MD. Goerge is an internal medicine resident at UT Southwestern and joined us for a Pulm PEEPs – BMJ Thorax journal club episode. He is now acting as a Pulm PEEPs Editor for the Pulm PEEPs Pearls series. Key Learning Points 1) Why airway clearance matters in non-CF bronchiectasis Non-CF bronchiectasis is defined by irreversible bronchial dilation with impaired mucociliary clearance, leading to mucus retention. Retained sputum drives the classic vicious cycle: mucus → infection → neutrophilic inflammation → airway damage → worse clearance. Airway clearance techniques (ACTs) are meant to interrupt this cycle, primarily by improving mucus mobilization and symptom control. 2) What ACTs are trying to achieve clinically Main benefits are: More effective sputum clearance Reduced cough/dyspnea burden Improved activity tolerance and quality of life Effects on spirometry are usually small. Exacerbation reduction is possible, but evidence is mixed—some longer-term data suggest benefit for specific techniques. 3) The main ACT “families” and when to use them Breathing-based techniques (device-free, flexible) ACBT (Active Cycle of Breathing Technique): breath control → deep breaths with holds → huffing. Pros: portable, adaptable, good first-line option. Key requirement: teaching/coaching to get technique right. Autogenic drainage: controlled breathing at different lung volumes to move mucus from peripheral → central airways. Pros: no device, can work well once learned. Cons: more technically demanding, needs training and practice. PEP / Oscillatory PEP (stents airways + “vibrates” mucus loose) PEP: back-pressure helps prevent small airway collapse during exhalation; often paired with huff/cough. Oscillatory PEP (Flutter/Acapella/Aerobika): adds oscillation that many patients find easy and satisfying to use. Good fit for: people who benefit from airway stenting, want something portable, and prefer a device. Mechanical/manual techniques (help when patient can't self-clear well) HFCWO (“the vest”): external chest wall oscillation; helpful for high sputum volumes, dexterity limits, or difficulty coordinating breathing maneuvers. Postural drainage/percussion/vibration: caregiver/therapist-assisted options; still useful but consider: GERD/reflux risk with certain positions Hemoptysis risk with vigorous techniques 4) How to choose the “right” technique (the practical framework) There is no one-size-fits-all. Match the tool to the patient: Sputum burden (volume/viscosity) Strength, coordination, cognition, dexterity Comorbidities (GERD, hemoptysis history, severe obstruction/airway collapse) Lifestyle + portability (what they'll actually do) Cost/access and availability of respiratory therapy/physio support A key mindset from the script: this is not a lifetime contract—reassess and adjust over time with shared decision-making. 5) Evidence takeaways (what improves, what doesn't) ACTs reliably improve sputum expectoration and often symptoms/QoL. QoL/cough scores (e.g., SGRQ, LCQ) tend to improve modestly, particularly with oscillatory PEP and some vest studies. Lung function: typically minimal change; occasional short-term FEV₁ benefit is reported in some vest trials. Exacerbations: mixed overall; the script highlights a longer-term RCT of ELTGOL showing fewer exacerbations at 12 months vs placebo exercises. Safety: generally excellent; main cautions are hemoptysis and reflux (depending on technique/positioning). 6) Special population pearls Hemoptysis / fragile airways: start with gentle breathing-based ACTs (ACBT, controlled huffing); avoid overly vigorous oscillatory/manual methods if concerned. Severe obstruction or early airway collapse: PEP/oscillatory PEP can help by keeping small airways open on exhalation. Mobility/coordination barriers: consider HFCWO vest or simple oscillatory PEP devices to enable daily adherence. During exacerbations: keep it simple—1–2 reliable techniques, prioritize daily consistency, and re-check technique. 7) The “real” bottom line Start with simple, self-manageable options (often ACBT ± PEP). The “best” ACT is the one the patient will do consistently. Reassess technique and fit over time; education and demonstration are part of the therapy. References and Further Reading Lee AL et al., “Airway clearance techniques for bronchiectasis,” Cochrane Database Syst Rev. 2015; PMC7175838. PMID: 26591003. Athanazio RA et al., “Airway Clearance Techniques in Bronchiectasis,” Front Med (Lausanne). 2020; PMC7674976. PMID: 33251032. Iacono R et al., “Mucociliary clearance techniques for treating non-cystic fibrosis bronchiectasis,” Eur Rev Med Pharmacol Sci. 2015; PMID: 26078380. Polverino E et al., “European Respiratory Society statement on airway clearance techniques in bronchiectasis,” Eur Respir J. 2023; PMID: 37142337. Doumat G, Aksamit TR, Kanj AN. Bronchiectasis: A clinical review of inflammation. Respir Med. 2025 Aug;244:108179. doi: 10.1016/j.rmed.2025.108179. Epub 2025 May 25. PMID: 40425105.
Breath to Breath Film that celebrates the contributions by Dr. Michael WelshA Conversation with Dr. Michael Welsh: The Science That is Saving LivesIt'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 likeWhat it's like to see patients thriving because of the treatments that grew from that workWhy the University of Iowa decided to produce Breath by Breath, and what the film means to him personallyWhat new treatments and discoveries he's exploring nowHearing 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 andBiophysics at the University of Iowa. From 1989-2024, he was an Investigator of the HowardHughes Medical Institute. He directs the Pappajohn Biomedical Institute and the Cystic FibrosisResearch Center.Dr. Welsh obtained an MD and completed an internal medicine residency at the University ofIowa. He then trained in pulmonary medicine and research at the University of California, SanFrancisco and physiology at the University of Texas, Houston.Dr. Welsh and his colleagues discovered that the protein affected in cystic fibrosis is an anionchannel, elucidated its functional mechanisms, discovered ways that mutations disrupt function,and showed that mutations can be rescued. This work led directly to development of medicinesthat target CFTR and are highly effective for most cystic fibrosis patients. To understand diseasepathogenesis, he and his collaborators developed cystic fibrosis pigs, the first mammal, otherthan mice, in which a gene was targeted to generate a disease model.His clinical activities focused on pulmonary diseases. He has trained many physicians andscientists and received the Distinguished Mentor Award, University of Iowa Carver College ofMedicine.To watch the film, click here: https://uihealthcare.org/cystic-fibrosis-research-iowa#documentaryTo learn more about Dr. Welsh: https://internalmedicine.medicine.uiowa.edu/profile/michael-welsh 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
Beyond the Pearls: Cases for Med School, Residency and Beyond (An InsideTheBoards Podcast)
Today's Case A 30-year-old nulliparous Caucasian woman comes in for her routine gynecology appointment. She tells you that she would like to discontinue her birth control as she and her partner are planning to become pregnant in the next year. The patient says that one of her family members has cystic fibrosis (CF). Today's Reader Dr. Kada Fehlman is an Internal Medicine Resident at Huntington Health Cedars-Sinai. About Dr. Raj Dr Raj is a quadruple board certified physician and associate professor at the University of Southern California. He was a co-host on the TNT series Chasing the Cure with Ann Curry, a regular on the TV Show The Doctors for the past 7 seasons and has a weekly medical segment on ABC news Los Angeles. More from Dr. Raj The Dr. Raj Podcast Dr. Raj on Twitter Dr. Raj on Instagram Want more board review content? USMLE Step 1 Ad-Free Bundle Crush Step 1 Step 2 Secrets Beyond the Pearls The Dr. Raj Podcast Beyond the Pearls Premium USMLE Step 3 Review MedPrepTGo Step 1 Questions MedPrepTGo Step 2 Questions Learn more about your ad choices. Visit megaphone.fm/adchoices
How is cystic fibrosis diagnosis evolving? In this second deep dive, Nicholas Simmonds explores advances in diagnostic tools and shares his experience with the CF registry, highlighting its value as a powerful resource for tracking long-term treatment effectiveness. A must-listen for clinicians and anyone interested in how cystic fibrosis is diagnosed, and how progress is monitored over time. Timestamps: 00:00 – Introduction 00:52 – Adulthood diagnosis 06:00 – Advanced diagnostics 10:37 – Survival variability 15:05 – CF Registry
In this third and final deep-dive episode, Nicholas Simmonds highlights the importance of collaborative networks, such as the European Cystic Fibrosis Society (ECFS) Clinical Trials Network, in enabling global clinical trials. He also emphasises the central role of the patient voice in developing new therapies, using CFTR modulators as a key example. Timestamps: 00:00 – Introduction 00:55 – ECFS Network 03:29 – Trial design 04:54 – Therapy frontiers 07:48 – Curative approaches 13:07 – Clinician message
Nicholas Simmonds joins host Saranya Ravindran for a deep dive into how adult cystic fibrosis (CF) care is evolving. Drawing on decades of experience, he discusses the major shifts in adult CF management, the vulnerable transition from paediatric to adult services, and strategies that ensure a smooth handover. Explore how longer survival brings new challenges, from fertility to mental health and emerging comorbidities, and why continuity of multidisciplinary care is more crucial than ever. Timestamps: 00:00 – Introduction 01:15 – Adult care 04:12 – Smooth handover 10:10 – Evolving needs
In this rapid-fire episode, Nicholas Simmonds answers key questions about cystic fibrosis (CF), from common misconceptions and the value of registry data to CF testing, and the transition from paediatric to adult care. Perfect for listeners short on time.
There have been great advances in the treatment of cystic fibrosis, but nevertheless it remains a progressive, life‑shortening genetic disease as many patients still don't reach normal function and continue to face infections, exacerbations, and impaired quality of life. Siona Therapeutics is building a new generation of small‑molecule therapies that directly stabilize the region most affected by the most common mutation underlying the disease for the roughly 90 percent of patients who carry the defect. We spoke to Mike Cloonan, CEO of Sionna, about its experimental therapy that stabilizes the misfolded protein at the heart of the disease, its exploration of combination therapies with existing and proprietary therapies, and its $219 million IPO in February, despite the difficult financing environment for development-stage biotechs.
How can the threat of antimicrobial resistance be mitigated? In this second deep-dive episode, Lisa Saiman shares insights into the value of antibiotic stewardship and the nuance of microbial susceptibility testing in patients with cystic fibrosis. A must-listen for anyone curious about the overlap between cystic fibrosis and pathogen resistance. Timestamps: 00:00 – Introduction 03:30 – Antimicrobial resistance threat 04:20 – Antibiotic stewardship 07:00 – Hospital lessons 10:00 – New antimicrobials
In the final instalment of this episode on paediatric cystic fibrosis, Lisa Saiman explores the global inequities that persist, noting how progress is hindered by limited access to advanced antimicrobial resistance prevention tools such as sequencing and pathogen identification. She emphasises the need for strengthened international collaboration to help bridge these gaps. Timestamps: 00:00 – Introduction 00:56 – Care inequities 03:30 – Global lessons 07:08 – Global collaborations 08:56 – Future directions
Thomas English talks with a guest from Wrapping For A Cure in Nevada about their holiday wrapping initiative. The guest is Denna Archer. She discusses the origins of the initiative and how Cystic Fibrosis has affected her family. She also discusses how the Wrapping For A Cure program works and how residents can take advantage of it. Other topics include how to donate and other ways to get involved.
In this rapid-fire episode, Lisa Saiman answers key questions about infections in children with cystic fibrosis, from everyday prevention measures to the threat of antimicrobial resistance. Perfect for listeners short on time but eager to boost their paediatric cystic fibrosis knowledge in just a few short minutes.
Lisa Saiman joins host Saranya Ravindran to discuss infection prevention in children with cystic fibrosis, exploring evolving hospital and clinical practices, key respiratory pathogens, and practical strategies to reduce infection risk at home. Learn about how the risk of infection affects the day-to-day lives of patients with cystic fibrosis. Timestamps: 00:00 – Introduction 01:05 – Prevention importance 04:34 – International management 05:58 – Cross-infection risk 06:55 – COVID-19 lessons 07:43 – Home risk 10:57 – Childhood pathogens
Landon Carpenter is a volunteer in Blue student ministry. He sits down with Noisy Narratives to talk about how he met his wife, what it means to love and partner with a spouse with Cystic Fibrosis, and how he feels God prepared him for their life. Landon's perspective is encouraging and his story is a testament to God's faithfulness. Landon's wife, Angela, shared her story in an earlier season - you can listen here.PROGRAM NOTE - please pardon the audio issues during the intro. Equipment problems created some challenges - but we will have them fixed for next week. The interview audio is good!
This Giving Tuesday, we have a special episode of the ATS Breathe Easy podcast. Wildfires are a destructive phenomenon that decimates communities, infrastructure, and wildlife. But wildfires and wildfire smoke are also severely damaging to human health, especially for those who have lung disease. Stacie Reveles, of the Cystic Fibrosis Research Institute, talks about her struggles living in wildfire country with a child who has cystic fibrosis. She discusses everything from dealing with medications and evacuations, the mental toll, and the importance of continued research into these illnesses. Air Health Our Health podcast creator Erika Moseson, MD, MA, of Legacy Health in Oregon hosts. Donate to the ATS Research Program today to help families like Stacie's: https://aeugmntn.donorsupport.co/page/Stacie The ATS Wildfire Disaster Guidance sheet: https://www.thoracic.org/patients/patient-resources/resources/wildfires.pdf Listen to the Our Health in Wildfire Season episode of Air Health Our Health for how to prepare your home and community: https://creators.spotify.com/pod/profile/airhealthourhealth/episodes/Our-Health-in-Wildfire-Season-e162en9/a-a2ata11
CME in Minutes: Education in Rheumatology, Immunology, & Infectious Diseases
Please visit answersincme.com/KUS860 to participate, download slides and supporting materials, complete the post test, and obtain credit. In this activity, an expert in pulmonary medicine discusses the treatment of patients with non–cystic fibrosis bronchiectasis (NCFB) using dipeptidyl peptidase 1 (DPP1) inhibitors. Upon completion of this activity, participants should be better able to: Recognize the rationale for targeting neutrophilic inflammation in non–cystic fibrosis bronchiectasis (NCFB); Describe the clinical impact of DPP1 inhibitors for treating NCFB, in the context of conventional therapy; Outline strategies to individualize the selection of neoadjuvant, adjuvant, or perioperative immunotherapy approaches for patients with resectable stage IIB/C and stage III/IV melanomaApply strategies to enhance outcomes for patients with NCFB as the treatment landscape evolves; and Apply strategies to enhance outcomes for patients with NCFB as the treatment landscape evolves.
Please visit answersincme.com/KUS860 to participate, download slides and supporting materials, complete the post test, and obtain credit. In this activity, an expert in pulmonary medicine discusses the treatment of patients with non–cystic fibrosis bronchiectasis (NCFB) using dipeptidyl peptidase 1 (DPP1) inhibitors. Upon completion of this activity, participants should be better able to: Recognize the rationale for targeting neutrophilic inflammation in non–cystic fibrosis bronchiectasis (NCFB); Describe the clinical impact of DPP1 inhibitors for treating NCFB, in the context of conventional therapy; Outline strategies to individualize the selection of neoadjuvant, adjuvant, or perioperative immunotherapy approaches for patients with resectable stage IIB/C and stage III/IV melanomaApply strategies to enhance outcomes for patients with NCFB as the treatment landscape evolves; and Apply strategies to enhance outcomes for patients with NCFB as the treatment landscape evolves.
From CFTR modulators to gene therapy, what's next in cystic fibrosis research? Peter Mogayzel examines future therapies, ongoing access challenges, and the crucial link between advocacy, innovation, and global health equity in cystic fibrosis care. Timestamps: 00:00 – Introduction 01:05 - CFTR modulators 03:35 – Anti-inflammatory drugs 04:18 – mRNA therapy 04:53 – Side effects 07:13 – Access to care 08:37 – Exercise 10:00 – Final thoughts
What defines excellence in cystic fibrosis clinical care? Peter Mogayzel discusses the latest therapeutic guidelines, managing pulmonary exacerbations, the role of home monitoring, and how multidisciplinary teams work together to support patients in leading full, active lives. Timestamps: 00:00 – Introduction 00:41 – Key guidelines 01:54 – Multisystem disease 02:32 – Pulmonary exacerbations 04:04 – Chronic medications 05:37 – Home monitoring 08:15 – Multidisciplinary care
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
In this quickfire introduction, Peter J. Mogayzel answers fast questions about the evolution of cystic fibrosis care in the USA, from early screening and survival milestones to innovation, policy, and equitable access. A perfect primer on where cystic fibrosis care stands today.
How did the USA build one of the world's most comprehensive cystic fibrosis care systems? In Part 1 of our deep dive, Peter Mogayzel explores the development of national cystic fibrosis centres, the impact of newborn screening, and how a strong foundation in care standards transformed outcomes across generations. Timestamps: 00:00 – Introduction 01:38 – Care models 02:40 – Early screening 04:20 – CF Foundation 05:33 – What's changed?
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
This is Part 2 of Josh and Amy Glasscock's story. We'll hear how Josh's cystic fibrosis has worsened and irreparably damaged his lungs. Soon, they'll be confronted with several life and death decisions. Only God will be able to carry them through the storms ahead. Listen to Part 1 in Episode #38 "Chronically Sick. Abundantly Alive. - Josh & Amy Glasscock, Part 1" Show notes: https://compelledpodcast.com/episodes/josh-amy-glasscock-pt-2 ++++++++++++ Compelled is a seasonal podcast using gripping, immersive storytelling to celebrate the powerful ways God is transforming Christians around the world. These Christian testimonies are raw, true, and powerful. Be encouraged and let your faith be strengthened! Want to help make new episodes? Either make a one-time gift, or become a Monthly Partner at: https://compelledpodcast.com/donate Perks of being a Monthly Partner include: EARLY ACCESS to each new Compelled episode 1 week early! FULL LIBRARY of our unedited, behind-the-scenes interviews with each guest... over 100+ hours of additional stories and takeaways! Become a Monthly Partner by selecting the "Monthly" option during check-out. Show notes, emails, and more at: https://compelledpodcast.com Buy the Compelled book of testimonies, endorsed by Lee Strobel, Marvin Olasky, and more: https://compelledpodcast.com/book Compelled is a member of the Proclaim Podcast Network: https://proclaim.fm Learn more about your ad choices. Visit megaphone.fm/adchoices
Send us a textJohnny and BW talk a bit about last weeks SEC win against Arkansas and preview this weeks game against the Georgia Bulldogs. Then they are joined by Memphis' Action News 5 Anchor Joe Birch. Joe helps support the Cystic Fibrosis foundation and many other local philanthropies in Memphis. He talks a bit about how he ended up in Memphis and ultimately became a news anchor for channel 5. He also discusses his involvement with the St. Jude Marathon. Help support our cause to raise money for Cystic Fibrosis research by ordering a fresh roasted bag of coffee from Johnnypacker.netSupport the show
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
What's it like getting pepper-sprayed when you have a chronic lung disease? A homicide detective knows what's up. This week, we sit down with a guest who defies expectations: Jeremy, a homicide detective living with Cystic Fibrosis (CF). We dive into the unique challenges and surprising advantages of managing a demanding, high-stress career alongside a chronic illness. He opens up about the progression of his CF, the profound impact of the life-changing drug Trikafta, and his perspective on life expectancy before and after the medication. You can watch this entire episode over on YouTube.Follow Sickboy on Instagram, TikTok and Discord!
What's it like getting pepper-sprayed when you have a chronic lung disease? A homicide detective knows what's up. This week, we sit down with a guest who defies expectations: Jeremy, a homicide detective living with Cystic Fibrosis (CF). We dive into the unique challenges and surprising advantages of managing a demanding, high-stress career alongside a chronic illness. He opens up about the progression of his CF, the profound impact of the life-changing drug Trikafta, and his perspective on life expectancy before and after the medication. You can watch this entire episode over on YouTube.Follow Sickboy on Instagram, TikTok and Discord!
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
Our guest this week is a hard-charging Kauai'an, known for paddling into any death pit at Pipe and chasing XXL swells across the globe. His résumé is stacked, winning the Pipeline Invitational in 2014 earning a coveted Pipe Masters wildcard, and taking the crown at the prestigious Da Hui Backdoor Shootout with a $30K payday! Also being awarded “Wave of the Decade” in 2020, add to that multiple “Wave of the Winter” and “XXL Big Wave Award” nominations, it's clear he earned his place as a Big Wave Warrior!But if there's one moment that etched his name into surfing history and mainstream headlines, it was the wild Teahupoo incident when the jet ski he was driving went over the falls, literally launching over the head of Big-Wave Legend Raimana Van Bastolaer. A viral clip that lit up Social Media, covered by Sports Illustrated and major news outlets worldwide.Beyond charging slabs, he's managed the Quiksilver North Shore Athlete House for the last decade, and has the passion and dedicates time to giving back supporting those battling Cystic Fibrosis.We're honored to welcome to the show a true Hawaiian charger and legend of our sport, Reef “BIG CAT” McIntosh!
Beat Migs! And we talk all about climbing the stairs of T-Mobile Park for Cystic Fibrosis! Plus we go Straight to the Comments about the crazy catch Victor Robles made over the weekend!
In this deeply moving and inspiring episode of the Tough Girl Podcast, we're joined by Sophie Pierce, a 32-year-old social worker from Pembrokeshire, West Wales, who made history in March 2025 as the first person with Cystic Fibrosis to row an ocean. Diagnosed at just 3 months old, Sophie has lived with the challenges of a genetic condition that affects her lungs and digestive system and once carried a life expectancy of under 30 years. But Sophie's story is not defined by limitation—it's a bold testament to resilience, courage, and the power of hope. From working in fostering services to hiking the Welsh coast with her dogs, swimming in cold water, and sleeping in her campervan—Sophie has never shied away from living life on her terms. In this episode, she opens up about the life-changing impact of the Kaftrio drug trial, how she overcame mental health struggles, and what it truly meant to embrace life beyond the horizon by rowing across the Atlantic. She shares the highs and lows of the row: the months of preparation, team dynamics, magical moments at sea, and how it feels to return to "normal life" after an extraordinary adventure. Sophie's message is powerful and universal—you are capable of so much more than you think. If you're looking for inspiration, perspective, and an honest exploration of living—and thriving—with a life-limiting condition, this episode is not to be missed. New episodes of the Tough Girl Podcast drop every Tuesday at 7 AM (UK time)! Make sure to subscribe so you never miss the inspiring journeys and incredible stories of tough women pushing boundaries. Do you want to support the Tough Girl Mission to increase the amount of female role models in the media in the world of adventure and physical challenges? Support via Patreon! Join me in making a difference by signing up here: www.patreon.com/toughgirlpodcast. Your support makes a difference. Thank you x Show notes Who is Sophie 32 years old Living in Pembrokeshire, West Wales Working as a social worker in fostering service Living with a genetic health condition - Cystic Fibrosis (CF) March 2025 - becoming the first person with CF to row an ocean What is CF Being born with it and getting diagnosed at 3 months old Having a shorter lifespan How CF affects her lungs and digestive system Living with reduced lung function Her younger years and how she was treated Why exercise and being out in the fresh air is actively encouraged Not liking exercise as a child Growing up knowing she had CF and why it was normal Being empowered with CF and how her parents encouraged her Her mum reminding her to stay as well as she could for as long as she could, so she could benefit from treatments in the future. Learning about her shorter life expectancy and managing those feelings Adopting a positive attitude - being determined to live her life and not letting CF hold her back Wanting to make the most of her time Understanding that time is precious Not needing a pension, savings or need to put down roots The help and support available to help manage the mental and emotional challenges Experiencing panic attacks while her health was declining Working with a psychologist Using tools from Acceptance and Commitment Therapy (ACT) Feeling frightened of letting the big feelings of sadness in Feeling so sad about living with CF The drug trial - 5 years ago Taking the Kaftrio drug The challenges of winter for CF patients ‘The Purge' - coughing for 24 hrs How her life and lungs has changed Trustee for CF Trust Being asked to row an ocean Forming a crew of 4 Stumbling blocks and being told no - by the World's Toughest Row Atlantic Dash Securing the finances and managing the stress of getting to the start line Her biggest fear and worrying about staying well enough to do the row Getting out on to the ocean. Having electrical issues with the boat Name of the boat - The Spirit of Bluestone Magical moments on the Atlantic Ocean Day 46 coming to the end of the row Rowing schedule and needing to get extra sleep during the night The challenges of team dynamics Finding their roles within the group Being the social secretary and bringing fun to the boat The biggest lesson from rowing the ocean You can do so much more than you think you can Being supported by the right people around you Dealing with the adventure blues How life in weird after rowing an ocean Being in a really exciting place Future challenges?! Words of advice from the CF perspective Learning to life with CF How to connect with Sophie You are capable of so much more than you think you are Learn to reframe the negative voices in your head Social Media Instagram @sophiefpierce @cruisingfree2025
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