Podcasts about Cystic fibrosis

We discuss how Mario is going to be involved in the new ownership group, and preview the Stanley Cup Finals.Help Danny's Pizza and Hoagies raise money for Cystic Fibrosis at the link below:https://finest.cff.org/pittsburghfinest2026/AlexHvizdosEmail the show: contact@2fortalking.comFollow us:⁠https://x.com/joshyohe_⁠⁠pgh⁠⁠https://x.com/joebartnick⁠⁠https://x.com/cory_tucek⁠

Shota Yamamoto, MD, PhD; Takayuki Niitsu, MD; and Kenneth N. Olivier, MD, MPH, join CHEST® Journal Podcast Moderator Gretchen Winter, MD, to discuss their research into the current efficacy and safety profile of antiinflammatory therapies for bronchiectasis.   DOI: 10.1016/j.chest.2025.12.035 Disclaimer: The purpose of this activity is to expand the reach of CHEST content through awareness, critique, and discussion. All articles have undergone peer review for methodologic rigor and audience relevance. Any views asserted are those of the speakers and are not endorsed by CHEST. Listeners should be aware that speakers' opinions may vary and are advised to read the full corresponding journal article(s) for complete context. This content should not be used as a basis for medical advice or treatment, nor should it substitute the judgment used by clinicians in the practice of evidence-based medicine.  

Now that Evgeni Malkin has signed, what does Kyle Dubas do next?Help Danny's Pizza and Hoagies raise money for Cystic Fibrosis at the link below:https://finest.cff.org/pittsburghfinest2026/AlexHvizdosEmail the show: contact@2fortalking.comFollow us:⁠https://x.com/joshyohe_⁠⁠pgh⁠⁠https://x.com/joebartnick⁠⁠https://x.com/cory_tucek⁠

Join us for an “In The Know” special edition where our experts discuss our Cystic Fibrosis Foundation-accredited program that is co-directed by a pediatric pulmonologist and a pediatric gastroenterologist, enabling our team of experts to provide all the services a child needs in one location. Learn more about our Cystic Fibrosis Program. 

My friend Shana Reif suffered from Cystic Fibrosis, a genetic disease that primarily affects the lungs and other organs. It causes thick, sticky mucus to build up in the airways, leading to repeated infections, inflammation, and progressive lung damage. In many cases, the disease can advance until the lungs can no longer do what God created them to dobring oxygen into the body and sustain life. Cystic Fibrosis is a horrible and incurable disease, and it was the disease Shana endured all her life. When she was born, her parents were told she would not live much past her twentieth birthday. But Shana lived to be thirty-two. I came to know Shana in high school, not long after I became a follower of Jesus. After high school, we became very close friends. She edited my Bible college papers, and I visited her often during her many hospital stays. I also visited her at home as she recovered from the latest infection. By 2003, her lungs had been so damaged by chronic infections that she was placed on the waiting list for new lungs. She received a double lung transplant in 2004, but even then, her suffering did not fully end. Her body remained fragile. Her fight continued. But Shana loved Jesus. Though she struggled deeply with her disease, she held onto the hope of the gospel. One of the last emails I received from her was signed with words from her favorite hymn: Great is Thy faithfulness. In 2007, Shana died from complications after a procedure to reopen a constricted airway. When someone you love suffers like that, the question How long? is not theoretical. How long will disease ravage bodies? How long will death take those we love? How long will Gods people suffer in a world still broken by sin? How long before Christ makes all things new? Revelation 6:911 brings us to that question. But here, the cry comes specifically from those who have been slain because of the word of God and the testimony they maintained. The Martyrs: The Cost of Their Witness (v. 9) There are three cycles of judgment in Revelation: the seals, the trumpets, and the bowls. These cycles do not unfold in strict linear successionseals, then trumpets, then bowlsbut recapitulate the same period of history with increasing intensity, like birth pains. For our purposes, I simply want you to notice one pattern that helps us understand what is happening in this passage. In each cyclethe seals, trumpets, and bowlsthe first four judgments affect the world in broad, visible ways, but the fifth shifts the focus. The fifth seal shows the saints crying out for justice (Rev. 6:911). The fifth trumpet shows judgment beginning to fall on the enemies of Godthose who do not have the seal of God on their foreheads (Rev. 9:112; especially 9:4). The fifth bowl shows judgment reaching the very throne of the beast, whose kingdom wages war against all who refuse to worship him (Rev. 16:1011; cf. Rev. 13:78, 15). This is why the first four seals show us the horsemen riding across the earth. But when the fifth seal is opened, the focus shifts from what is happening on earth to what heaven sees when Gods people suffer because of the word of God and the testimony they maintain. These martyrs are not beneath the altar because they were victims of history. They are there because they belonged to the Lamb and remained faithful to the word of God and the testimony of Jesus. Their witness cost them their lives. John is showing us what Jesus had already told His disciples: If anyone wants to come after Me, he must deny himself, take up his cross, and follow Me (Matt. 16:24; NASB). The fifth seal reminds us that following Jesus is not merely a call to believe certain truths about Him; it is a call to bear faithful witness to those truths, even when obedience is costly. Polycarp is said to have been a disciple of the apostle John and later became the bishop of Smyrna. Smyrna, you may remember, was one of the seven churches Jesus addressed in Revelation. Jesus told that suffering church, Be faithful until death, and I will give you the crown of life (Rev. 2:10). Years later, Polycarp was arrested and ordered to deny Christ. When pressed to renounce Jesus, he replied, Eighty and six years have I served Him, and He never did me any injury: how then can I blaspheme my King and my Saviour? Polycarps witness cost him his life, but heaven did not see his death as Rome did. Rome saw a criminal to be silenced. Heaven saw a faithful witness beneath the altar. And we do not have to go back to Polycarp to see this kind of witness. You may remember the twenty-one Coptic Christians who were taken by ISIS in Libya and led onto a beach in orange jumpsuits. They were ordinary men who refused to renounce their faith in Jesus. Their blood was shed on earth, but Revelation 6 reminds us that heaven did not miss a drop. The world saw men being led to execution. Heaven saw faithful witnesses beneath the altar. Since 2015, conservative estimates suggest that more than 50,000 Christians have been killed for faith-related reasons around the world. According to Open Doors 2026 World Watch List, North Korea remains the most dangerous country in the world to be a Christian, while Nigeria is the deadliest, accounting for 3,490 of the 4,849 Christians killed for their faith during the latest reporting period. The seals describe the birth pains that mark this present age. The first four seals show us a world marked by conquest, war, famine, and death. But when the fifth seal is opened, we are shown what heaven sees when Gods people suffer because of the word of God and the testimony they maintain. The Altar: The Cry Before God (v. 10) Notice that John not only tells us that these faithful Christ-followers suffered and died for their faith, but also tells us where he saw these Christians. They are under the altar. This is a crucial detail that you can only understand if you know something about the Old Testament tabernacle that God told Moses to build. Scripture tells us that the earthly tabernacle was a copy and shadow of the one in heaven (Heb. 8:4-5; Exod. 25-31; 35-40). So when John sees an altar in heaven, he is not seeing something new, but the heavenly reality to which Israels worship had always pointed. Within the tabernacle, there were two primary altars. The bronze altar stood in the courtyard, where sacrifices were offered. The altar of incense stood near the Most Holy Place, close to the ark of the covenant, which represented the throne of God. Both altars help us understand what John sees. The blood of the sacrifice was poured at the altars base, and the incense rising before the Lord symbolized the prayers of Gods people ascending into His presence. So when John sees the souls of the martyrs beneath the altar, he sees their lives as precious before God and their prayers as heard before His throne. In the earthly tabernacle, a veil stood between the priests and God's immediate presence. But in heaven, no curtain hides His throne from His redeemed people. The martyrs are not far from God. They are beneath the altar, before the throne, and in the presence of the Lord God Almighty. Now, picture what is happening before Johns eyes. Those who suffered the ultimate cost for following Jesus are not behind the altar, nor are they on top of the altar. These saints are under the altar, which tells us that they are closest to the throne. Also, the martyrs are not passive, but are actively pleading for vindication in Gods heavenly court. There is no magical language here, for their cries are raw and honest. There is no anger hurled before God, but cries of vindication in light of their understanding of who God is! Notice what these dear saints include in their prayer: O Sovereign Lord, holy and true... Now lets stop there for a moment. The ESV translates the word well asSovereign Lord.The Greek word used here is not the most common term for Lord,kyrios, butdespotēs, and this is the only time it appears in the entire book of Revelation. The word these martyred saints use conveys absolute ownership, supreme authority, and sovereign mastery. We get our English worddespotfrom this word, but whiledespotusually carries a negative meaning in English, that is not the case whendespotēs is used of God in the New Testament. When used of God, it emphasizes His complete authority over creation, His servants, history, judgment, and justice. This matters because these Christians are not merely crying out to God as sufferers, asking whether He cares. They are crying out to the One they know to be the Sovereign Master over all things. They are appealing to the One who has the authority to judge, avenge, vindicate, and bring history to its appointed end. They are not crying out in doubt. They are crying out in faith. They know He is able. They know He is holy. They know He is true. And they know that the Sovereign Lord will do what is right. Notice what the saints attribute to God next. Not only is He the Sovereign Master, but He is holy. These saints who have suffered much understand that their God is utterly set apart from all evil, corruption, compromise, and injustice. He is not like the kingdoms and the kings of this world. He is not indifferent to injustice and the bloodshed at the hands of the wicked. He is not morally conflicted. He is pure in all His judgments, righteous in all His ways, and completely opposed to everything wicked. He is holy and these saints know it! God is not only holy; He is also true. When these saints plead their case before the throne of God, they do so knowing that He is faithful to all He has promised. He does not forget. He does not make empty threats or hollow promises. What He has spoken, He will do (Num. 23:19; Josh. 21:45; Isa. 55:1011; Titus 1:2; Heb. 10:23). So when these martyrs cry, How long? they are not questioning Gods goodness, nor are they doubting that He will keep His word. They are asking when the God who is holy and true will act in perfect faithfulness to His word and to those He has promised never to forsake (Deut. 31:6; Heb. 13:5; Rev). The breaking of the fifth seal and the prayer of these suffering saints teach us an important truth about how we can and should pray. They pray from their understanding of who God truly is. This is the kind of thing we read about in Daniel 11:32: ...the people who know their God shall stand firm and take action. These saints know their God, and so they cry out, O Sovereign Lord, holy and true, how long before you will judge and avenge our blood on those who dwell on the earth? This prayer is not a contradiction of Jesus command to love our enemies and pray for those who persecute us (Matt. 5:44). It is a plea to the holy and true God to judge evil, vindicate His people, and set the world right. Their cry is rooted in the justice of God, knowing that His Word teaches that vengeance belongs to Him and not to His people (Deut. 32:35; Rom. 12:19). The martyrs beneath the altar are asking God to do what only God has the right and authority to do. The Throne: The Completion of Gods Purpose (v. 11) Now, notice what happens next. God responds, meaning He heard their prayer. But He does not respond as we might initially expect. The God who is sovereign, holy, and true responds by giving these Christians white robes as a sign of honor, purity, and vindication. These robes signify the righteousness that is theirs because of Jesus. When we see this great multitude again in Revelation 7, we are told, They have washed their robes and made them white in the blood of the Lamb (Rev. 7:14). These martyred saints represent every faithful witness who has been slain for the word of God and the testimony they upheldfrom the earliest martyrs of the church to our brothers and sisters suffering for Christ today. They are not treated as victims of random violence but as saints who belong to Christ and whose witness is precious before God. God responds by giving them white robes and telling them to do the thing we all hate: wait. Verse 11 says they were told to rest a little longer. That word, rest, matters. God is not dismissing their cry. He is not ignoring their suffering. He is calling them to rest in His presence, assured that perfect justice will come in His appointed time and in His sovereign way. Why must they wait? Because other Christians will suffer as they did, and they must wait until their number is complete. This means Gods justice is not delayed because He is indifferent. It is delayed because His purpose is not yet complete. There are still more witnesses to be gathered, more saints to be strengthened, and more glory to be given to Christ through the faithful endurance of His people. Gods answer to their prayer was to wait a little while longer. Conclusion My friend Shana frequently asked the same question you may have asked more than you can count: How long O Sovereign Lord, holy and true... It is the plea of the suffering. Shana was not a martyr, she was not killed by persecutors because of the word of God. She died on the operating table due to complications at the hands of surgeons who were trying to ease her suffering. Let me tell you what Shana did know. She knew what it meant to suffer in a world that is still waiting for Christ to make all things new. She knew what it meant to groan. She knew what it meant to wait. She knew what it meant to hope. I know that God used her life to encourage and strengthen the faith of others. Revelation 6:9-11 teaches us that we need not pretend the pain we experience is small. We need not pretend injustice does not matter. We need not pretend that death is natural. We can cry How long and do so in faith, not despair. We can cry it to the Sovereign Lord, who is holy and true. The Lamb who opens the fifth seal, is the Lamb who sees the suffering of His people. He honors the witness of His redeemed. He gives those who follow Him rest. The Lamb who died for you, is the Lord who will bring His purpose to completion for His glory and for your good! So, my dear brothers and sisters, we wait. But we do not wait as people forgotten by the One who sits upon the throne. We wait as those who belong to the Lamb. We wait as those whose lives are precious before the One on the throne. And we wait with confidence that the One who is sovereign, holy, and true will do exactly what He has promised. We can trust Him to do what is good and right because that is who He is.

A mother, advocate and one woman's global fight for access. Beth Vanstone is working to ensure rare disease patients don't have to wait for the treatments they need to survive. Sometimes the most powerful friendships begin in the most unexpected places.  Beth Vanstone and I first connected on social media. At the time, we were simply two moms navigating the complicated, emotional, and relentless world of cystic fibrosis. But eventually the online messages turned into something more meaningful. Then, Beth attended one of The Bonnell Foundation's Gala events. That's when we finally met in person.  And from that moment on, we became dear friends.  It's proof that social media, when used for connection and purpose, can build incredible relationships. But what inspires me most about Beth isn't just our friendship. It's her relentless determination. Beth is the mother of Madi, who was diagnosed with cystic fibrosis at just eight months old. Suddenly Beth was navigating a healthcare system, researching treatments, learning medical language, and fighting for her daughter's future. Beth didn't stop there. Instead of focusing only on her own family, she chose to fight for every family. Today, Beth is a powerful advocate in Canada and a member of the Ontario Rare Action Group, where she works to improve access to life-saving therapies for people living with rare diseases like Cystic Fibrosis. And the reality she's fighting against is one many people don't understand. Most healthcare systems, not just in Canada but around the world were built to treat common diseases. They weren't designed for rare conditions that affect smaller populations. Because of that, patients with rare diseases often face enormous barriers: long approval timelines, delayed access to medications, and exhausting advocacy battles just to receive treatments that already exist. In some cases, patients wait months — even years — for medications that could dramatically improve or extend their lives. Beth is working to change that. Through her advocacy, she's pushing for reforms that could make a real difference for patients across Canada and beyond: • Faster access to innovative therapies • Improved newborn screening programs • Better diagnostic pathways • Centers of excellence for rare diseases • Removing financial barriers like deductibles that prevent families from accessing public programs And she's also raising an important global conversation. Here in the United States, lawmakers have debated policies like the Most Favored Nation Model, which look to international drug pricing systems like those in Canada and Europe as a model. But Beth reminds us that every system has challenges, and for rare disease patients, those challenges can be life-changing. Because when access to medication is delayed… Access is denied. And that's why advocacy across borders matters. She's not just advocating for her daughter. She's advocating for every patient still waiting for their breakthrough. And today, we're talking about what needs to change and how all of us can help make it happen. 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

While the gut microbiome often steals the spotlight, the microorganisms residing in our respiratory tract play a vital role in our health and immunity. In this episode, Dr. Sheena Fraser sits down with microbial ecologist Dr. Michael Cox to explore the fascinating, complex, and relatively uncharted territory of the lung microbiome.They discuss how the lung microbiome fundamentally differs from the gut, the daily flux of bacteria entering and leaving our airways, and the profound impacts of environmental factors like air pollution, smoking, vaping, and household cleaning products. Plus, Dr. Cox shares the massive challenges scientists face when studying these deep-tissue microbes and what the future of respiratory medicine might look like.What We Cover:From Seawater to Sputum: Using marine ecology techniques to decode human respiratory biology.Exploring the lungs' dynamic balance of microaspiration and mucociliary clearance.Meet the core lung bacteria (Streptococcus, Prevotella, Veillonella) and the puzzle of anaerobes in an oxygen-rich space.Environmental Disruptors: How pollution, smoking, and vaping inflame and alter the lung microbiome.Hidden Dangers of VOCs: The silent impact of everyday cleaning sprays and aerosols on respiratory health.Diet, Exercise, & Epigenetics: The systemic benefits of a high-fiber diet and fitness for chronic lung conditions like COPD and asthma.About Dr. Michael Cox is a microbial ecologist and the PGR Lead for the Institute of Microbiology and Infection at the University of Birmingham. His research focuses on the bacteria that reside in the respiratory tract in the context of respiratory diseases (such as COPD and Cystic Fibrosis). His lab works to understand the function of the respiratory microbiome, translate these findings for clinical benefit, and expand our understanding of the respiratory ecosystem beyond just bacteria.Connect with Dr Michael Cox:University of BirminghamScientific References & Further Reading:Cumming, K. J. (2018). "Long term effects of cleaning on the lungs." American Journal of Respiratory and Critical Care Medicine, 197(9):1099-1101.Hussain, S., et al. (2024). "Unlocking the secrets: VOCs and their devastating effects on lung cancer." Pathology - Research and Practice, 255:155157.Welsh, H. A., et al. (2026). "The effect of vaping on the human lung microbiota." Inhalation Toxicology, Vol 38, Iss 1.This podcast is brought to you in collaboration with the British Society of Lifestyle Medicine.Disclaimer:The content in this podcast is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your doctor or qualified healthcare provider. Never disregard professional medical advice or delay in seeking it because of something you have heard on this podcast.

What happens when a miracle drug gives you back your future, but your mind is still built for a shorter life?In this moving episode of Breathless, host Jeremie and guests dive into the "mental health fallout" of growing up with Cystic Fibrosis. For decades, the CF community focused on one goal: survival. But with the arrival of Trikafta, many are facing a new, unexpected existential crisis. We explore the architecture of growing up sick, the trauma of living with an "expiration date," and the difficult reckoning that occurs when the horizon of your life suddenly shifts from years to decades.Featuring clinical psychologist Dr. Jodi Carrington, CF advocate Lauren Clift, and CF Canada CEO Kelly Grover, this episode pulls back the curtain on the psychological complexity of being "saved" and the urgent need to invest in the mind with the same intensity we've invested in the lungs.Main Topics & Key Moments1. The Architecture of Growing Up SickThe Parental Mask: Jeremie reflects on his parents' stoicism and the realization that their strength often involved "shattering" out of his sight."What Happened Here?" vs. "What's Wrong Here?": Dr. Jodi Carrington explains how reframing the conversation from pathology to experience creates the empathy necessary for healing.The Inside of Trauma: Why trauma isn't defined by the diagnosis itself, but by how the story unfolds within the family and community.2. Living with an Expiration DateThe Body Keeps Score: Lauren Clift shares her journey of middle-school anxiety attacks and the subconscious ways she absorbed the fragility of her life.Financial & Life Planning: Jeremie discusses the "freedom" of having no foundation—spending every dollar and avoiding long-term plans because tomorrow wasn't guaranteed.The Identity Crisis: What happens when the "honeymoon phase" of a new drug ends and you realize your entire identity was built around dying young?3. The Trikafta ReckoningSurvivor's Guilt: Addressing the "cruel math" where 90% of the community benefits from Trikafta while 10% are left waiting, and the heavy emotional weight carried by those who received the miracle.The Hospital Visit Realization: Jeremie recounts the moment a nurse suggested a psychologist and a friend's simple acknowledgment—"That must be really hard"—broke the emotional floodgates.4. What Do We Do Now?CF Canada's Mental Health Focus: Kelly Grover discusses Peer Connect, a pilot program designed to help patients, dads, and caregivers "say the unsayable" together.The Optimal Human Operating System: Dr. Carrington outlines the four pillars needed for post-traumatic growth: Attachment, Regulation, Community, and Role/Purpose.Key Quotes"When a miracle drug gives you back your future, you still have to figure out what to do with a mind that was built for a much shorter life." — Host"Trauma has nothing to do with what happened to you. It's all about what happens inside of you." — Dr. Jodi Carrington"The scary part isn't thinking about me dying. The scary part is that other people think I'm dying. I'm trying to process the feelings of... I could have died." — Lauren Clift"We have invested billions of dollars into the biology... but the mind? The mind is still catching up. If we don't invest in that frontier... we will lose people not to their lungs, but to their loneliness." — Host Hosted on Acast. See acast.com/privacy for more information.

Bridging Two Countries, One Mission: Cesar and Nora Hernandez Fight for Spanish-Speaking CF Families “When Alex was diagnosed, we felt fear and responsibility. If we had access to information in Spanish, other families should too. No one should feel lost because of language.” Nora Hernandez From Mexico to Mission: How Cesar and Nora Hernandez Are Closing the CF Information Gap for Hispanic Families. “I came to this country to build a better future for my family. I never imagined that future would include fighting for awareness about cystic fibrosis, but now it's part of our mission.” Cesar Hernandez Cesar and Nora Hernandez were both born in Mexico, where accurate and accessible information about cystic fibrosis has not always been readily available. While progress is being made, with more experienced physicians and improving CF care, there is still significant work to do. In the United States, members of the Hispanic community are often underdiagnosed or diagnosed later than others. That gap in awareness and access is one of the reasons The Bonnell Foundation launched its CF Familia page, offering reliable information in both English and Spanish to help families navigate the complexities of cystic fibrosis. Cesar and Nora serve as ambassadors for this effort, creating videos that provide education, updates, and reassurance to Spanish-speaking families. Cesar also serves as a board member of The Bonnell Foundation, and we are deeply grateful for his leadership and heart for this community. Cesar originally came to the United States to build a better life and financially support his family in Mexico. After meeting Nora, he made the decision to stay and make the U.S. his permanent home. Together, they are raising two children, Scarlett and Alex, who was diagnosed with cystic fibrosis. Their story is one of resilience, faith, cultural pride, and advocacy. Transcript is also available on this podcast.     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

Cystic fibrosis (CF) is a genetic disorder causing digestive and breathing problems. Learn about testing before or during pregnancy, diagnosis and treatment for a baby born with CF. Learn more at yourpregnancyweekbyweek.com.

Some people with cystic fibrosis have seen life-changing results from Trikafta, but not every patient responds to the treatment. The University of Kansas Health System looks at the research helping the group of CF patients who have been left behind by current therapies. Dr. Steve Stites is joined by cystic fibrosis patient Jason White, pulmonologist and critical care specialist Dr. Joel Mermis, and Dr. Matthias Salathe, Chief Research Officer for the University of Kansas and Chief Science Officer of The University of Kansas Health System. Together, they explain how CFTR mutations, theratyping, swab testing, and gene therapy clinical trials may help identify new treatment options for people living with cystic fibrosis and those with the common F508del mutation.

Episode Summary: The Impossible MilestonesThe Season 2 premiere of Breathless explores a biological and existential revolution. For decades, Cystic Fibrosis was defined by a "physical perimeter"—a list of things that were simply impossible. But with the advent of transformative drugs like Trikafta, those walls are vanishing.Host Jeremie opens with a visceral comparison between a 2017 spiritual "holotropic breathing" experience and the 2021 pharmaceutical miracle of his first dose of Trikafta. We then hear from elite athletes who shattered expectations long before the "miracle drug" existed, and we look at how Cystic Fibrosis Canada is pivoting its entire mission from "extending life" to supporting a life "without limits."Main Topics & Key Moments1. The Gateway to BreathingSalt Spring Island (2017): Jeremie describes a profound meditative state where, for a moment, the "heavy, wet coat" of CF was stripped away.The Blue Pill (2021): The "impossible milestone" found in a blister pack. Jeremie recounts the first morning he woke up without the "wet rattle" in his lungs, realizing his biology had been rewritten.2. The Science of the "Flow"The Broken Valve: Dr. Paul Eckford (Chief Scientific Officer, CF Canada) explains the CFTR protein.Chloride, Salt, and Water: A breakdown of why CF lungs create "concrete" mucus and how new modulators open the cellular gates to let water flow, clearing the airways.3. Shattering the Finish Line: Lisa BentleyThe Undiagnosed Athlete: Lisa won 11 Ironman championships despite having CF, including a period where she didn't even know she had the disease.The "Superpower": How meeting children with CF gave Lisa a purpose beyond winning, leading to her "lights out" fourth-place finish at the Hawaii Ironman World Championships while battling a chest infection.4. The Power of Delusion: Sophie Grace HolmesThe Two-Year Warning: At 19, Sophie was told she had two years to live. Her response? A bucket list that started with summiting Mount Kilimanjaro with 50% lung function.36 Marathons in 36 Days: Sophie's journey from a nationally ranked sprinter to an ultra-endurance icon, and her shock at how "easy" running became after Trikafta boosted her lung function to 110%.5. The Existential WhiplashFrom Pediatric to Geriatric: Kelly Grover (CEO, CF Canada) discusses the challenge of pivoting a non-profit toward supporting adult needs like housing, nutrition, and retirement.The Paradox of Progress: Why mental health challenges (anxiety and depression) are intensifying even as physical health improves. Jeremie describes the "existential whiplash" of having to plan for a future he never expected to have.Key Quotes"Trikafta didn't just open my airways; it dismantled the perimeter. The walls I spent thirty years banging against have simply… vanished." — Host"I am going to be the best sick person on that start line. And what I might lack in lung health, I'm going to make up for in heart." — Lisa Bentley"I didn't even realize I was struggling my whole life because I didn't have the opportunity to actually feel what it's like to actually breathe properly." — Sophie Grace Holmes"I might have a bit of a freakout if all of a sudden the world was my oyster with no restrictions on it." — Kelly Grover Hosted on Acast. See acast.com/privacy for more information.

Education, connection, and community are at the heart  of our CF community. On Saturday, April 18th from 11:00 a.m. to 1:30 p.m. we gathered at the Next Step Gallery in Ferndale. Set in a bright gallery space surrounded by art, the event offered a welcoming environment for meaningful conversation, learning, and connection. It was pure joy with the smell of great food in the air. Food from my sister in laws restaurant, Bangkok Cuisine (in Royal Oak) filled the air, it smelled amazing and filled the air. Education Day is more than a traditional event. It's an opportunity for people living with cystic fibrosis, parents, caregivers, healthcare professionals, and advocates to gather in one space to share experiences and support one another. A highlight of the afternoon was our “live” podcast recording, offering attendees a chance to hear authentic conversations about life with cystic fibrosis, advocacy, and the challenges and hopes shaping the community today. We all talked about education, advocacy, and what lies ahead for the CF community. The relaxed setting allowed people to connect not just through information, but through shared experiences. Events like Education Day help strengthen the bonds within the CF community by reminding everyone that they are not alone in their journey. Whether you are living with CF, raising a child with the disease, working in healthcare, or supporting someone you love, this gathering is meant to inform, inspire, and bring people together. Every story matters. Every voice matters. And every person who attends becomes part of the conversation. To watch the the premiere of our Embracing Egypt podcast enjoy it here:  https://youtu.be/SlMscQ6Spjg   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

“Being a CF aunt has shaped so much of my life. Now I get the opportunity to turn that love and connection into helping even more people at Breathe Strong CF."  Julie Dunn Eichenberg didn't just find the cystic fibrosis community, she's been part of it for more than 30 years as a proud CF aunt. That personal connection is what makes this next chapter so meaningful. Julie recently stepped into the role of Executive Director at BreatheStrong CF, where the focus is on helping people with cystic fibrosis live stronger, healthier lives through exercise, education, and empowerment. And while she brings decades of experience in leadership, fundraising, and relationship-building, she's honest about getting used to the role. She's learning. Listening. Figuring out the day-to-day. And really taking the time to understand how she can best serve the community in this new position. Before this, Julie spent 20 years at Turner Broadcasting System (now part of Warner Bros. Discovery), and later held leadership roles at Florida State University and Fan Data Insights. But no matter where her career took her, the CF community was always part of her life. She's also been deeply involved with the Cystic Fibrosis Foundation, serving as Chair of the Georgia Chapter and contributing at the national level. We talk about what it feels like to step into a leadership role that's so personal. The excitement, the pressure, and the responsibility that comes with it. Julie shares what she's learning, what's surprised her, and why her connection as a CF aunt continues to guide every decision she makes. Because for Julie, this isn't just a job,  it's personal. 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

Men with CF and Infertility: The Science, The Options, The Hope. Pete Proimos is an entrepreneur, a chronic illness advocate, and the founder of the Filotimo Foundation, a nonprofit dedicated to supporting individuals and families affected by cystic fibrosis. Diagnosed with CF as an infant, Pete kept his diagnosis private for decades. It wasn't until his forties that he chose to speak publicly about living with the disease, and that brave decision has changed lives. Pete is married to Annie, and together they are raising three children. His journey into fatherhood is part of what fuels his passion to make sure others with CF understand their options when it comes to building a family. Joining him in this important conversation is Colin Thomas, who leads the Family-Building Program at the Filotimo Foundation. Colin also lives with CF and became a father of five through IVF. In addition to his advocacy work, he serves as Vice President of Operations at IVY Fertility. He brings both professional expertise and deeply personal experience to this discussion, sharing honestly about the challenges and triumphs of becoming a parent with CF. One critical truth we discuss: Men with cystic fibrosis are not infertile because they don't produce sperm. Most are born without a connected vas deferens — the tube that carries sperm — which makes natural conception difficult. But with medical support, including sperm retrieval and IVF, biological fatherhood is often absolutely possible. This episode dives into the mission behind the Filotimo Foundation and the powerful work being done through its infertility and family-building program, work that is giving hope, clarity, and real options to families navigating CF. 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

Three decades caring for patients with CF, that's Dr. Alan H. Cohen. His experience continues to shape everything he does today. As a pediatric pulmonologist (board-certified) , he has walked alongside patients through some of their hardest moments, including advanced lung disease and transplantation. Dr. Cohen was previously co-director of the largest pediatric lung transplant program in North America.Those years at the bedside are what ultimately led Dr. Cohen into drug development, where he has spent more than 25 years working to turn scientific innovation into real-world therapies for people who are still waiting for better options. As the Chief Medical Officer of Arcturus Therapeutics, he brings both clinical perspective and urgency to the company's work in mRNA-based therapies for cystic fibrosis and other rare diseases.“Clinical trials aren't just about science, they're about people who are willing to help move the field forward.”In this thoughtful and engaging conversation, Dr. Cohen reflects on how cystic fibrosis care has evolved over the past 35 years, from symptom management to breakthroughs in gene therapy and mRNA technology. Dr. Cohen discusses why clinical trials are essential to progress, especially for rare diseases, and why patient participation plays such a critical role in moving new therapies forward. Dr. Cohen also shares how the strength of the CF community continues to inspire his work, offering both realism and hope for the future of CF research.You'll also hear more about the personal side of this wonderful scientist! The Arcturus team packed Bonnell Foundation Hospital Bags with comfort products for caregivers, and CF adults for California CF Clinics. #teamworkClinical trials are an important step to understand whether a medicine works for its intended purpose.  Please see our active clinical trials below. For any questions email:  Community@ArcturusRx.com. 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

This week, Bobbi Conner talks with MUSC's Dr. Christina Mingora about the impact of recent advances in treating cystic fibrosis.

On this episode of The Mark White Show, I'm talking 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: cota.org/cotaforcolemansfight/

“What if a blood draw didn't have to feel terrifying, Abby Rose is a child life specialist. And if you have never taken advantage of all they have to offer when your child is hospitalized, you're going to want to connect with them after you listen or watch this podcast!The North American Cystic Fibrosis Conference is one of those places you attend to learn—but it's also a place where you meet people who quietly leave a lasting mark. One of those people is Certified Child Life Specialist Abby Rose.Abby works at Seattle Children's Hospital, supporting both the Cystic Fibrosis program and Pediatric Hemodialysis. Originally from Wisconsin, she earned her bachelor's degree in Psychology and Family Studies from the University of Wisconsin–Eau Claire, followed by a master's degree in Child Life from Edgewood College.In her role, Abby focuses on outpatient care, working closely with children and families to create individualized coping plans. She supports kids through procedures many of us take for granted—blood draws, throat swabs, vaccinations, while also helping families navigate pill swallowing, treatment tolerance, sibling support, and the everyday challenges that can feel overwhelming in CF care.People like Abby made a profound difference for kids like one of my daughters—children who are frightened by procedures or don't fully understand what's about to happen to them. Child Life Specialists play a critical role in hospital settings, helping children feel safer, more informed, and more in control during some of their most vulnerable moments.Today, I'm excited to talk with Abby about the work she does—and why it matters so deeply.In our conversation, we'll explore:The Beads of Courage program and why it's so meaningful to children and familiesWhy Abby is such a strong advocate for transparency, open communication, and the rights of patients and familiesWhat draws her personally to Child Life work, and why she believes in it so deeplyAnd some of the “tricks of the trade”—the practical tools and techniques she uses to help kids feel calmer and more cooperative during procedures like blood drawsThis is a conversation about care, trust, and the people who help make hard moments just a little bit easier. 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

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Tom opens this week's livestream with a reminder about the New Biology Experience at Polyface Farm (June 2026).-Registration is still open, and Tom invites viewers to join for a weekend of talks, music, good food, and reconnecting with friends and community.New Biology Experience link here.Highlights from this session include:-Tom revisits a widely shared “photograph of an atom” and presents it as an audience intelligence test, pointing out a contradiction: if the nucleus were the size of a pinhead, electrons should be about a mile away, not the inch-scale distance depicted in the image.-A discussion on how mathematics is often used to imply the existence of things that have never been directly demonstrated, illustrated with his analogy of a hypothetical “bucket made of fairy dust.”-Tom examines a case where DNA testing suggested a woman was not the mother of children she had given birth to, using the example to question the idea that DNA testing is “100% foolproof” and to discuss how scientific claims can become unfalsifiable.-A deep dive into the claim that cystic fibrosis is a proven genetic disease, including a review of foundational literature and the assumptions behind the idea that genes code for specific proteins.-A critique of research on human metapneumovirus (HMPV), focusing on how viruses are said to be “isolated” in cell culture and highlighting logical contradictions when cytopathic effects are rarely observed.-Tom reflects on a recent interview discussing HPV vaccination campaigns, emphasizing the importance of distinguishing intentions from strategies when debating health policies. He argues that discussions should focus on evidence and factual claims, rather than accusations about motives.Tom closes the session by encouraging viewers to stay focused on clear reasoning, evidence, and careful questioning of scientific claims. Support the showWebsites:https://drtomcowan.com/https://www.drcowansgarden.com/https://newbiologyclinic.com/https://newbiologycurriculum.com/Instagram: @TalkinTurkeywithTomFacebook: https://www.facebook.com/DrTomCowan/Bitchute: https://www.bitchute.com/channel/CivTSuEjw6Qp/YouTube: https://www.youtube.com/channel/UCzxdc2o0Q_XZIPwo07XCrNg

A Kiwi woman has made history becoming the first New Zealander with Cystic Fibrosis to complete an Ironman. Kirsty Parsons spoke to Ingrid Hipkiss.

Over the course of his career, Dr. Michael Welsh has seen cystic fibrosis transform from terminal to highly treatable. On this episode of Talk of Iowa, we listen back to Charity Nebbe's conversation with Dr. Welsh of the Carver College of Medicine at the University of Iowa, who has been studying and treating Cystic Fibrosis for nearly 50 years. Dr. Welsh was awarded the 2025 Canada Gairdner International Award for his work on cystic fibrosis. Then, we hear about the Homestead Folk Art Museum in the Amana Colonies. (This show was originally produced on June 5, 2025.)

In this episode of the HR Like a Boss podcast, John interviews HR leader Tammy Luby, who shares her journey in human resources, her impactful experiences, and her unique presentation titled 'Stop Flicking Chickens.' Tammy discusses the purpose of HR, the importance of making a difference in people's lives, and her aspirations to turn her presentation into a book. The conversation emphasizes the need for positivity and mentorship in HR, as well as the importance of looking beyond daily challenges to create a meaningful impact.ABOUT TAMMY LUBYTammy Luby, MBA, SPHR, AI+HI, & SHRM-SCP Director of Human Resources, Riverhead Building Supply Adjunct Professor & Faculty Team lead, Southern New Hampshire University. Meet Tammy Luby, a dynamic HR professional with over 25 years of experience in the field. With an MBA and certifications as a Senior Professional in Human Resources (SPHR) and Senior Certified Professional (SHRM-SCP), Tammy is a powerhouse of knowledge and expertise. She is fluent in the entire lifecycle of the employment process, including multi-state and union environments. Tammy is not just an HR generalist; she is a proactive agent of change, certified in AI+HI, and known for her support of HR initiatives on Long Island. Often referred to as the HR ambassador of the East End, Tammy is deeply involved in professional groups to advance the HR profession and ethics. She is passionate about building the workforce of the future by engaging students in high schools, colleges, and technical/trade schools through presentations, tours, and workshops. In addition to her role at Riverhead Building Supply, Tammy co-founded and chairs The HR East End Circle, a Human Resource round table based out of Eastern Long Island, NY. She is also a newly appointed member of the Board of Directors with the Long Island Chapter of The Society of Human Resource Management (SHRM). Tammy's volunteer work includes contributions to the United Way, Cystic Fibrosis, American Heart Association, and The American Cancer Society. She is proud to be part of a company committed to a respectful workplace, honesty, and integrity. When she's not shaping the future of HR, you can find Tammy sharing her knowledge as an adjunct professor at Southern New Hampshire University or leading the HR faculty.

I have spent my career around some of the world's most focused individuals, but Kristan Hawkins brings a level of grittiness and fearlessness that is truly in a league of its own. As the president of Students for Life, Kristan isn't just an activist; she is a mother of four and a "revolutionary" for the most vulnerable among us. In this powerful episode, we go far beyond the viral debate clips to discuss the heart of her mission. Kristan gets incredibly real about: Her "total crap day" in San Antonio that led to saving a life—and meeting Baby Mercer. The psychology of conflict and why she believes change only happens when you produce friction. The shocking truth about eugenics in modern medical systems and the "billion-dollar pharmaceutical industry". Raising a family with Cystic Fibrosis and the radical choice to choose life even when the numbers are against you. Whether you agree with her or not, you cannot deny the passion and the "grittiness" Kristan brings to this conversation. We discuss why she refuses to be a people-pleaser and how she finds the strength to keep standing tall—even when the threats and vitriol come from both sides of the aisle. Connect with Kristan Hawkins: Instagram: @kristan_hawkins Website: studentsforlife.org Sponsors: PreBorn: Provide one life-saving ultrasound for just $28 at https://preborn.com/sage Cowboy Colostrum: Get 25% Off Cowboy Colostrum with code SAGE at https://www.cowboycolostrum.com/SAGE

We're going deep today, Slushies. Kathy and Tobi school us on the origin of the word “podcast” with its roots in both early Apple technology and agricultural lingo (think broadcast of seeds). In this episode we're broadcasting our appreciation for poems by Erin Evans. We admire Evans' sound work and her ability to craft powerful lines with plain language. In the first poem, the poet's confrontation of medical jargon reminds Marion of Whitman's poem When I Heard the Learn'd Astronomer. An encounter between patient and doctor in Evans' poem underscores the difference between learning and knowing that recalls Leslie Jamison's book of essays, The Empathy Exams.    The second poem's Japanese title evokes the film Rashomon for Jason, who takes issue with the notion that our writerly imaginations are limited only to the words available in our own language. Schadenfreude, anyone? We're digging the close focus on language in these poems. Marion appreciates that the poem elevates a term she initially passed off as one from pop culture wellness. Meanwhile we conflate our Wabi-sabi with our kintsugi and poet Ross Gay with the poet Ross White (who is the actual originator of the gas station sushi theory). But don't let our mistakes keep you from experiencing Evans' powerful endings.   Slushies, if you're attending AWP in March, please stop by and see us at the book fair. We'll be at table 1272. We'd love to see you in person. Thanks, as always, for listening!   At the table: Tobi Kassim, Jason Schneiderman, Kathleen Volk Miller, Marion Wrenn, Lisa Zerkle, and Lillie Volpe (sound engineer)  Author Photo:    Author Bio: Erin Evans was diagnosed with Cystic Fibrosis when she was one year old. Her work is greatly influenced by her experience living with chronic illness. She has had poems published in Defunct, Revel, A Mouthful of Salt, and Nimrod-International Journal, which awarded her its Francine Ringold Award for New Writers. Her work was chosen by Kwame Dawes for his American Life in Poetry column. She lives in Vermont with her beautiful and brilliant kids. Exacerbation She says the word quickly looking down at my file   then back at the x-ray clipped against the glowing box.   My scarred and patchy lungs, and all their flaws  on display, almost make me blush.   Embarrassed that I couldn't do any better, have been better. I focus instead    on the soft ribbons of my ribcage that fan like ghost hands   lit up for Halloween. Again, she says it,   looking at me now  as she sits on the round rolling chair   and reaches for her stethoscope. Exacerbation, which I finally looked up   after years and years of hearing it, simply means a worsening.   But she was taught not to state  the obvious, to disguise the truth   in the language of textbooks, and lectures, years of learning   how best to look right through someone. And I was taught to breathe in when I was told,   to push past that pain in my chest  that has no name, nor chapter in any book.   Komorebi Scott nudges my kayak away from the shore.   The yellow plastic scrapes the sand and seashell bottom  until it glides to the open water, over deep-green seaweed that waves its version of goodbye.    A soft pushing away  a departing of one world, only to enter another,  so vast there are no names for things:   When I die  let it be like this.   Some languages have words for words we never even thought to speak.   In Japanese, for instance, there is a word  for the sunlight filtering through the leaves of a tree.   Tell me, why isn't there a name for this: The ocean's soft  pull, the gentle begging it does,      like a child tugging  at the tail of your shirt,    reminding you it's time to go.   Riches  As I cradle my morning tea I watch her from the window.   Crouched down in the yard, with her hand outstretched. Even   from here I see the arthritis knot and bend her fingers   from years of knitting intricate sweaters and working late-night shifts at the hospital.   The chickens come to her  hesitantly, to peck the scratch from her warm hand.   She told me once that even when  she has nothing to give them   they still peck softly at her wedding band.   They surround her now, their bobbing and dipping beaks   and as they take the seeds she offers,  she smooths the long yellow feathers   that in the right light turn golden.   If I could inherit a single thing from her it would be this patience,   this trust that life will come to you even when your body    is leaving this world slowly, one cell at a time.

“Patients are waiting…”Those simple but profound words from Dr. Steve St. Onge set the tone for this conversation, and for why this work matters so deeply.Science has always fascinated me. I often joke that I'm not smart enough to be a scientist, but I have endless respect for the people who are, especially those who can take incredibly complex ideas and explain them in a way the rest of us can truly understand. This is why I know you're going to love my conversation with Dr. St. Onge. Steve is the Chief Business Officer at Clarametyx. Dr. St. Onge is a PharmD and MBA with more than 15 years of experience spanning clinical care, medical affairs, and leadership in biotechnology. What stands out most about Steve isn't just his impressive résumé, it's his ability to clearly explain the science, the strategy, and, most importantly, the urgency behind the work Clarametyx is doing.I first met Steve in person at the North American Cystic Fibrosis Conference (NACFC) in Seattle, where we had the opportunity to really connect and talk about Clarametyx's approach. Their work focuses on targeting biofilm-driven inflammation and progressive lung damage, an area of significant unmet need for people living with chronic respiratory diseases, including cystic fibrosis. In this conversation, Steve breaks down what biofilms are, why they're so difficult to treat, and how Clarametyx is thinking differently about tackling the inflammation and lung damage they cause.We also talk about the long road of drug development, the responsibility that comes with working in rare disease, and why the phrase “patients are waiting” isn't just a saying, it's a call to action. This episode is an honest, accessible, and hopeful look at science in motion, and at the people behind the research who are driven by the patients counting on progress.If you've ever wanted a clearer understanding of how innovative science moves from idea to impact—and why time matters so much, his is a conversation you won't want to miss. 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

Send a textMorning Prayer (God Giver Of Life; Asthma/ COPD / Cystic Fibrosis; Government Leaders; Praise The LORD)Thank you for listening, our heart's prayer is for you and I to walk daily with Jesus, our joy and peace aimingforjesus.com YouTube Channel https://www.youtube.com/@aimingforjesus5346 Instagram https://www.instagram.com/aiming_for_jesus/ Threads https://www.threads.com/@aiming_for_jesus X https://x.com/AimingForJesus Tik Tok https://www.tiktok.com/@aiming.for.jesus

Sure, it's court-mandated...but we still give it our best shot! It's Feel Good Friday!

Dr. Charlotte McKee, Chief Medical Officer at Sionna, describes the nature of cystic fibrosis (CF, a genetic disease caused by a mutation in the single CFTR gene. While current CFTR modulator therapies do not address the most common mutation, Sionna's novel oral medicine is designed to target the previously undruggable NBDI domain of the CFTR protein. This new therapy aims to lead to better lung function and prevent the accumulation of permanent damage to other organs like the pancreas, gut, and liver.  Charlotte explains, "Cystic fibrosis is a genetic disease. The gene was actually discovered in 1989 for cystic fibrosis. It's considered a rare disease, but it's a relatively large rare disease. And one of those rare diseases that is potentially fatal, as you mentioned, it's thought of as a lung disease. And most patients, if their life is shortened, it's typically because of lung disease, because the lungs can be very severely affected. But the protein is caused by a genetic mutation in a gene called CFTR, and the protein is made from that gene. The CFTR protein is present on every epithelial cell of the body."   "Sionna is focused on a novel target in the CFTR protein. So you may know that, actually, there are approved medicines that have been developed over the last couple of decades that improve the function of the CFTR protein. And they've really advanced the clinical field, and there have been tremendous advances for people with CF. But this protein, this CFTR protein that goes wrong in CF, is a big, complicated, multi-part channel."   "Another unusual thing about CF is that there's one mutation that's so common around the world, and the part of CFTR that goes most wrong with F508del. This mutation is in a part of CFTR that was previously considered undruggable. It's that part that is called NBD1, and Sionna has been working for over a decade and a half of research, actually starting with Genzyme and then continuing through the company, Sanofi, has actually figured out how to develop potential medicines against this part of the CFTR protein that goes most wrong. And so we are working on these, they're called modulators, CFTR modulators, or we are working on NBD1-focused potential medicines that can directly bind to and stabilize this specific part of the CFTR protein."   #Sionna #CysticFibrosis #NBD1Stabilizers #CFTRModulators #RareDisease #Biotechnology #MedicalInnovation #PrecisionMedicine #GeneticDisease #PulmonaryHealth sionnatx.com Download the transcript here

Dr. Charlotte McKee, Chief Medical Officer at Sionna, describes the nature of cystic fibrosis (CF, a genetic disease caused by a mutation in the single CFTR gene. While current CFTR modulator therapies do not address the most common mutation, Sionna's novel oral medicine is designed to target the previously undruggable NBDI domain of the CFTR protein. This new therapy aims to lead to better lung function and prevent the accumulation of permanent damage to other organs like the pancreas, gut, and liver.  Charlotte explains, "Cystic fibrosis is a genetic disease. The gene was actually discovered in 1989 for cystic fibrosis. It's considered a rare disease, but it's a relatively large rare disease. And one of those rare diseases that is potentially fatal, as you mentioned, it's thought of as a lung disease. And most patients, if their life is shortened, it's typically because of lung disease, because the lungs can be very severely affected. But the protein is caused by a genetic mutation in a gene called CFTR, and the protein is made from that gene. The CFTR protein is present on every epithelial cell of the body."   "Sionna is focused on a novel target in the CFTR protein. So you may know that, actually, there are approved medicines that have been developed over the last couple of decades that improve the function of the CFTR protein. And they've really advanced the clinical field, and there have been tremendous advances for people with CF. But this protein, this CFTR protein that goes wrong in CF, is a big, complicated, multi-part channel."   "Another unusual thing about CF is that there's one mutation that's so common around the world, and the part of CFTR that goes most wrong with F508del. This mutation is in a part of CFTR that was previously considered undruggable. It's that part that is called NBD1, and Sionna has been working for over a decade and a half of research, actually starting with Genzyme and then continuing through the company, Sanofi, has actually figured out how to develop potential medicines against this part of the CFTR protein that goes most wrong. And so we are working on these, they're called modulators, CFTR modulators, or we are working on NBD1-focused potential medicines that can directly bind to and stabilize this specific part of the CFTR protein."   #Sionna #CysticFibrosis #NBD1Stabilizers #CFTRModulators #RareDisease #Biotechnology #MedicalInnovation #PrecisionMedicine #GeneticDisease #PulmonaryHealth sionnatx.com  Listen to the podcast here  

"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/

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.

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 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

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.

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.

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

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!