Podcasts about Cystic fibrosis

Autosomal recessive disease mostly affecting the lungs

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Best podcasts about Cystic fibrosis

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Latest podcast episodes about Cystic fibrosis

Living With Cystic Fibrosis
A CF Mom, Summer Bauder, delivering hope across Continents.

Living With Cystic Fibrosis

Play Episode Listen Later Nov 17, 2025 33:06


Delivering Hope across Continents. The why and how Summer Bauder got involved with CF Vests Worldwide.Summer Bauder is a remarkable woman whose story embodies compassion, perseverance, and global impact.Summer's journey began as a stay-at-home mom managing a bustling household a life filled with love, chaos, and purpose. But everything changed when her brother-in-law's daughter was diagnosed with cystic fibrosis (CF). What started as a family connection to CF grew into a calling that now spans continents.Today, Summer serves as a key volunteer for CF Vest Worldwide, a nonprofit that provides life-changing airway clearance vests to people with CF who can't afford them. Her days are filled with cleaning, sorting, and shipping donated vests to families across the globe, and sometimes, personally delivering them.From India to Colombia to Ecuador, Summer has met families whose gratitude reminds her daily why this work matters. She shares powerful, heartwarming moments, like watching a child take easier breaths for the first time, and the challenges of navigating logistics, language barriers, and limited resources.Next up? Honduras, where Summer delivers 10 vests to families in need.Balancing her large family and international volunteer work hasn't been easy, but Summer says her experiences at home prepared her for the organizational and emotional demands of this mission. Her story is a reminder that one person — one family — can make a global difference.This episode shines a light on the power of community, family support, and the ripple effect of kindness.If you'd like to support Summer's efforts, CF Vest Worldwide is currently accepting donations of child-sized garmentsused to distribute vests to children with CF around the world.What's her connection? Her why?  It's her brother, Josh Bauder.To see more about Summer's work, watch her video: https://youtu.be/sHSB9kIp060To contact CFVWW: rod@cfvww.org Please like, subscribe, and comment on our podcasts!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featuredThanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/en

The Practical Protection Podcast

Hi everyone, Alan is joining me again to give us all insights into arranging protection insurance for someone living with cystic fibrosis. Cystic fibrosis is a condition that can be difficult to insure for life insurance. Historically, the life expectancy of a person living with cystic fibrosis has been much lower than average, which means that insurers see it as quite a high risk for a claim. The good news is that modern medicine has now significantly improved the outlook and half of people living with CF are now likely to live to at least the age of 56.Unfortunately standard routes for personal critical illness cover and income protection are not currently available. The absolutely best way to be covered by these insurances is through group cover through an employer, but even then there can still be some technicalities that can cause an issue at point of claim.The key takeaways:Approximately 11,000 are affected by cystic fibrosis in the UK and 1 in 25 people carry the gene without knowing itThe median age for people living with cystic fibrosis that died in 2022, was the age of 33.Three case studies of arranging life insurance for people living with cystic fibrosis.Next time I am going to be talking about the FCA's recent protection insurance paper and my interpretation of what this means for our industry going forward.Remember, if you are listening to this as part of your work, you can claim a CPD certificate on our website, thanks to our sponsors NextGen Planners.

Living With Cystic Fibrosis
Deadlift and Donuts: Jennifer McKinnon is fierce

Living With Cystic Fibrosis

Play Episode Listen Later Nov 10, 2025 27:38


Jennifer McKinnon is fierce. Doctors said Jennifer wouldn't live past the age of three.Today, she's a single mom of twins, an unstoppable advocate who's raised over a million dollars for cystic fibrosis research, and the founder of Just One More Breath. Her story is proof that while CF is tough, Jennifer is tougher, and that hope, when held fiercely, can change everything.Jennifer was born in the 1970s with cystic fibrosis, a time when the disease was still cloaked in uncertainty and fear. Few children with CF lived to see adulthood, and the treatments that exist today were still decades away. From the very beginning, every breath she took was a small act of defiance. Hospital rooms became her playgrounds, IV poles her silent companions, and the steady rhythm of nebulizers the soundtrack of her childhood.But even in those sterile rooms filled with machines and medicine, Jennifer's spirit burned bright. She refused to let CF define her — or defeat her. Through endless hospital stays, setbacks, and the exhausting daily grind of treatments, she found reasons to laugh, to dream, and to keep fighting. Every milestone, every birthday, every deep breath, became a victory.Then came 2019, a year that would rewrite her story once again. With the arrival of Trikafta, the groundbreaking CF modulator, Jennifer's world shifted. Suddenly, life felt lighter — her lungs stronger, her body more capable. For the first time, she could picture a future not limited by her disease but expanded by possibility. She could plan, imagine, and live, truly live, in ways she once only dreamed of.Yet Jennifer's story isn't just about survival; it's about transformation. Rather than turning inward, she turned outward — channeling her strength into action. She's raised over a million dollars for cystic fibrosis research, driven by the belief that every dollar brings us closer to a cure. She became a mother to twins through the extraordinary gift of her sister, proving that family and love can find a way even when the odds seem impossible.Today, Jennifer stands as a single mom, a tireless advocate, and the voice behind Just One More Breath, a platform dedicated to raising awareness, sharing stories, and inspiring others to keep pushing forward ... one breath at a time.Her journey is a powerful reminder that life with cystic fibrosis is unpredictable, yes, but it is also breathtakingly beautiful. It's a life lived with intention, courage, and grace. Jennifer's story teaches us that even when the odds seem insurmountable, resilience can turn pain into purpose, and hope can carry you through the darkest storms.Because for Jennifer, every breath is more than survival.It's a celebration of strength, of love, and of the limitless power of the human spirit.Jennifer on IG: https://www.instagram.com/just.onemorebreath/?hl=enWebsite: https://jennifer-mckinnon.com/?  Please like, subscribe, and comment on our podcasts!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featuredThanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/en

Compelled
REMASTERED: #39 My Last Breath (Life With Cystic Fibrosis) - Josh & Amy Glasscock, Part 2

Compelled

Play Episode Listen Later Nov 4, 2025 53:07


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

Johnny's World
Joe Birch Interview and Georgia Game Preview

Johnny's World

Play Episode Listen Later Nov 4, 2025 38:54


Send us a textJohnny and BW talk a bit about last weeks SEC win against Arkansas and preview this weeks game against the Georgia Bulldogs.   Then they are joined by Memphis' Action News 5 Anchor Joe Birch.  Joe helps support the Cystic Fibrosis foundation and many other local philanthropies in Memphis.  He talks a bit about how he ended up in Memphis and ultimately became a news anchor for channel 5.  He also discusses his involvement with the St. Jude Marathon.  Help support our cause to raise money for Cystic Fibrosis research by ordering a fresh roasted bag of coffee from Johnnypacker.netSupport the show

Living With Cystic Fibrosis
The Triple Threat to the Rare Disease Ecosystem w/ Dr. Chung

Living With Cystic Fibrosis

Play Episode Listen Later Nov 3, 2025 36:43


The Triple Threat to the Rare Disease Ecosystem — A Conversation with Dr. Wendy ChungSometimes you come across someone whose work changes the way you think about an entire field. That's exactly what happened when I read about Dr. Wendy Chung in Rare Revolution Magazine.Dr. Chung is one of those rare people who stands at the intersection of science, medicine, ethics, and humanity. She's a clinical and molecular geneticist, the Chief of Pediatrics at Boston Children's Hospital, and the Mary Ellen Avery Professor at Harvard Medical School. She leads NIH-funded research into the genetics of conditions like pulmonary hypertension, autism, birth defects, and a wide range of rare diseases. She's advanced newborn screening for life-threatening disorders like spinal muscular atrophy and Duchenne muscular dystrophy — work that means the difference between life and death for many families. She's been recognized with the Rare Impact Award from NORD, is a member of the National Academy of Medicine, and is a leading voice on the ethics of genomics.But titles and accolades only tell part of her story. What stands out most is her deep commitment to the people behind the science, the families living day in and day out with conditions that most of the world has never heard of.When we spoke, Dr. Chung described what she calls the “triple threat” to the rare disease ecosystem:Misinformation in health that spreads faster than facts and erodes trust in science.Lack of access to healthcare, leaving too many without the treatments they need, when they need them.Insufficient investment in research, slowing the pace of discovery and delaying life-saving therapies.Each of these challenges is daunting on its own, but together they create a fragile and often hostile environment for progress in rare disease research and care.She pointed out that while most genetic conditions are rare individually, collectively they are surprisingly common — affecting millions worldwide. That's a staggering thought, especially considering how little public awareness and funding rare diseases often receive.We also talked about autism, a condition she has studied extensively. She emphasized that autism is a spectrum, with multiple causes, the majority of which are genetic. Understanding that complexity is crucial, not only for advancing science but also for helping families cope and make informed decisions.One of the threads running through our conversation was the urgent need for better communication in science. In an age where misinformation spreads in seconds, the ability to convey facts clearly and accessibly isn't just a nice skill — it's a necessity. Miscommunication or confusion doesn't just impact public opinion; it influences policy decisions, research funding, and the direction of healthcare itself.Dr. Chung stressed that advocacy matters at every level — from the conversations parents have with their children's doctors to the policies shaped in Washington. Community engagement isn't just a feel-good idea; it's one of the most effective ways to accelerate progress. Patients, families, scientists, and policymakers all have a role to play, and collaboration among them is where breakthroughs happen.In the end, our conversation left me with two truths. First, that rare disease progress depends on persistence from so many people. The researchers who refuse to give up, from families who continue to fight for answers, and from advocates who push for change. Second, that truth itself is a kind of medicine. The more accurately, compassionately, and consistently we can communicate about rare diseases, the better chance we have at building a healthcare ecosystem that works for everyone.Dr. Wendy Chung is leading that charge, not just in the lab, but in the public square. And in this fight, both matter equally. Please like, subscribe, and comment on our podcasts!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featuredThanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/en

Sickboy
The Homicide Detective with Cystic Fibrosis

Sickboy

Play Episode Listen Later Oct 29, 2025 61:25


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!

Sickboy
The Homicide Detective with Cystic Fibrosis

Sickboy

Play Episode Listen Later Oct 29, 2025 61:25


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!

AcademicCME Podcast
Clinical Update on Non-Cystic Fibrosis Bronchiectasis: Strategies to Manage Exacerbations and Lung Function

AcademicCME Podcast

Play Episode Listen Later Oct 28, 2025 25:58


This activity was supported by an educational grant from Insmed. Please go to ⁠ https://academiccme.com/epcncfbepod/⁠ and complete the evaluation to receive your CE/CME Credit. Credit is available through September 7, 2026.

Living With Cystic Fibrosis
The Power of Speaking Out about CF with Peter Proimos

Living With Cystic Fibrosis

Play Episode Listen Later Oct 13, 2025 43:11


When Pete Proimos decided to share his cystic fibrosis story at 40, after decades of silence , it marked a turning point. That decision, guided by his philosophy “Out at 40,” sparked a movement built on honesty, empathy, and empowerment.Today, as CEO of the Filotimo Foundation, Pete is redefining what it means to thrive with an invisible illness and helping others find strength in their own stories.Pete is a tireless advocate for people living with cystic fibrosis. Diagnosed at birth, Pete has spent his life navigating the challenges of CF—while rewriting the narrative of what it means to truly thrive with a chronic, invisible illness.Through the Filotimo Foundation, Pete has built a strong network of support for individuals and families—while breaking down the stigma surrounding conditions you can't always see.Whether you live with CF, love someone who does, or simply care about creating a more compassionate world, Pete's story will inspire you.To learn more about Pete's Foundation; https://filotimofoundation.org  Please like, subscribe, and comment on our podcasts!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featuredThanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/en

l8nightwithchoccy's podcast
A conversation with Reef "BIG CAT" McIntosh_QUIKSILVER

l8nightwithchoccy's podcast

Play Episode Listen Later Oct 10, 2025 151:19


Our guest this week is a hard-charging Kauai'an, known for paddling into any death pit at Pipe and chasing XXL swells across the globe. His résumé is stacked, winning the Pipeline Invitational in 2014 earning a coveted Pipe Masters wildcard, and taking the crown at the prestigious Da Hui Backdoor Shootout with a $30K payday! Also being awarded “Wave of the Decade” in 2020, add to that multiple “Wave of the Winter” and “XXL Big Wave Award” nominations, it's clear he earned his place as a Big Wave Warrior!But if there's one moment that etched his name into surfing history and mainstream headlines, it was the wild Teahupoo incident when the jet ski he was driving went over the falls, literally launching over the head of Big-Wave Legend Raimana Van Bastolaer.  A viral clip that lit up Social Media, covered by Sports Illustrated and major news outlets worldwide.Beyond charging slabs, he's managed the Quiksilver North Shore Athlete House for the last decade, and has the passion and dedicates time to giving back supporting those battling Cystic Fibrosis.We're honored to welcome to the show a true Hawaiian charger and legend of our sport, Reef “BIG CAT” McIntosh!

Conference Coverage
Saliva as a Window Into Cystic Fibrosis: Metabolic Biomarkers and Clinical Potential

Conference Coverage

Play Episode Listen Later Oct 10, 2025


Host: Ryan Quigley In a 2025 study investigating salivary metabolites as potential biomarkers in cystic fibrosis, researchers identified distinct metabolic patterns linked with key complications as well as correlations with lung function. In this AudioAbstract, Ryan Quigley discusses how a simple saliva sample could provide clinicians with an accessible, non-invasive tool to stratify patients, monitor therapies, and advance personalized care in cystic fibrosis. This topic was also discussed at the 2025 CHEST Annual Meeting.

Conference Coverage
Saliva as a Window Into Cystic Fibrosis: Metabolic Biomarkers and Clinical Potential

Conference Coverage

Play Episode Listen Later Oct 10, 2025


Host: Ryan Quigley In a 2025 study investigating salivary metabolites as potential biomarkers in cystic fibrosis, researchers identified distinct metabolic patterns linked with key complications as well as correlations with lung function. In this AudioAbstract, Ryan Quigley discusses how a simple saliva sample could provide clinicians with an accessible, non-invasive tool to stratify patients, monitor therapies, and advance personalized care in cystic fibrosis. This topic was also discussed at the 2025 CHEST Annual Meeting.

Australia Wide
12-year-old drummer makes rock band debut with The Living End

Australia Wide

Play Episode Listen Later Oct 9, 2025 30:10


Coverage that provides news and analysis of national issues significant to regional Australians.

Australia Wide
Swiss mining giant gets $600m bailout for Queensland refinery and smelter

Australia Wide

Play Episode Listen Later Oct 8, 2025 30:00


Australian taxpayers will fund a multi-million dollar rescue package for mining giant Glencore to keep copper processing facilities operating in Queensland until the end of 2028. 

Living With Cystic Fibrosis
The Heart Behind Liam's Mission: A Mother-Son Journey of Advocacy, Art & Resilience

Living With Cystic Fibrosis

Play Episode Listen Later Oct 6, 2025 31:08


Turning Diagnosis into Purpose: Deana and Liam's MissionWhen Liam was diagnosed with cystic fibrosis (10 years ago) at just three weeks old, Deana's world shifted overnight. What began as one mother's fight for her child has grown into a movement empowering families, educators, and kids facing chronic illness, all through courage, creativity, and hope.From bestselling advocacy workbooks to emotional wellness initiatives, Deana and Liam are transforming personal challenges into meaningful change. You'll hear how storytelling became their most powerful tool, and why their message, hope is louder, is resonating far beyond the CF community.In this episode, we talk about:How The Ultimate CF Family Workbook came to lifeThe importance of storytelling in chronic illnessTheir upcoming children's book and animated series, Liam's ChroniclesHow they're changing the conversation around invisible illnessLearn more about their work or grab a workbook: [Insert Website or Linktree]Available on Amazon + EtsyFeatured by hospitals like SickKids and CHEOConnect with Deana & Liam:FB: Facebook.com/liamsmission00To order: www.liamsmission.ca IG: Instagram.com/liamsmission Please like, subscribe, and comment on our podcasts!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featuredThanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/en

The Wellbeing Rebellion
The Silent Struggle - Why Men Still Can't Talk About Mental Health (And How We Can Change That) with Tim Wotton

The Wellbeing Rebellion

Play Episode Listen Later Oct 2, 2025 43:05


Men's mental health is still one of the hardest conversations to have, both at work and at home. Despite all the progress in recent years, too many men continue to stay silent, with devastating consequences. In this episode, I'm joined by Tim Wotton, who's faced more challenges than most, living with cystic fibrosis and type 1 diabetes, and yet has built a life defined by resilience, discipline and hope. Tim shares what he's learned about strength, survival, and why it's time we change the way men are supported to talk about their mental health.Highlights:(05:03) Why silence is still mistaken for strength(11:37) Tim's ‘power of three' resilience philosophy(18:18) Discipline as the unglamorous key to survival(27:43) The unseen struggles hidden behind a smile(36:11) Why men still fear showing vulnerabilityFind out more:Paul McGee The SUMO Guy (Shut Up and Move On)‘How Have I Cheated Death? A Short and Merry Life with Cystic Fibrosis' by Tim Wotton HERE and HERE.Take the Aurora 360 Quiz: How Effective Is Your Company's Wellbeing Strategy? Click HereConnect with us here:Website: aurorawellnessgroup.co.ukLinkedIn: NgoziLinkedIn: ObehiAurora Company Profile 2024Book a Call here

BJ Shea Daily Experience Podcast -- Official
Daily Podcast pt. 3 - "We climbed 1500 stairs!"

BJ Shea Daily Experience Podcast -- Official

Play Episode Listen Later Sep 22, 2025 20:18


Beat Migs! And we talk all about climbing the stairs of T-Mobile Park for Cystic Fibrosis! Plus we go Straight to the Comments about the crazy catch Victor Robles made over the weekend!

Living With Cystic Fibrosis
Sick Chick Strong: The Story of Jennifer Dunlea

Living With Cystic Fibrosis

Play Episode Listen Later Sep 22, 2025 55:06


The unstoppable Jennifer Dunlea is an advocate, a fighter, and an all-around powerhouse. Born with Cystic Fibrosis, Jen has faced more medical battles than most people do in a lifetime, including surviving a rare cancer at just 23 years old. She's a two-time double lung transplant recipient, living with diabetes and gastroparesis, and still somehow finds the energy to raise her voice, and awareness, for the CF and transplant communities every single day. You might know her from social media, where she shares her journey with honesty, humor, and heart under the handle @jencantbreathe on TikTok, Instagram, YouTube, and Facebook.Trust me, you're going to be inspired by this conversation.To follow Jen: @jencantbreatheCOTA health fundraising campaign: https://cota.org/cotaforjenslungs/our-story/The Sick Chick Hour: https://open.spotify.com/show/7eegd1SwLueAnrxueC7VVeYoutube for Jen: https://youtube.com/@jencantbreathe?si=QXrvZniAYTwjmv2v     Please like, subscribe, and comment on our podcasts!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featuredThanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/en

Living With Cystic Fibrosis
From Patient to Powerhouse: Leslie Baldwin's story

Living With Cystic Fibrosis

Play Episode Listen Later Sep 15, 2025 33:04


The challenges and triumphs of living with a rare disease. Leslie Baldwin shares her personal journey with Common Variable Immune Deficiency and Ehlers-Danlos Syndrome. You'll hear what fueled her passion for advocacy and the creation of Michigan Rare (MI-RARE). Together, they discuss the power of community, the importance of patient empowerment, and how collaboration with policymakers can expand access and resources for those living with rare conditions.TakeawaysAdvocacy is essential for the rare disease community.Building connections provides vital support.Patients should feel empowered to speak up for their health.Collaboration with policymakers can drive positive change.Storytelling inspires and unites the community.Engagement raises awareness and strengthens support networks.Advocacy days introduce rare disease issues to lawmakers.Recognizing unique challenges leads to better understanding.Coalitions amplify the collective voice of rare disease advocates.Empowering patients and caregivers enhances quality of life.About Leslie BaldwinA Michigan native now living in Holt, Leslie is a rare disease advocate. She co-founding MI-RARE, a foundation uniting rare disease voices across Michigan, alongside Kayla Miller, Kathi Luis, Kortney Lee, Chris Draper, and Laura Bonnell.Her advocacy experience is wide-ranging: she has worked with Autism Speaks, National Organization for Rare Disorders (NORD), The EveryLife Foundation, NIH, CMS, and the FDA. As Director of Strategic Advancement with Texas Rare Alliance, she helped pass key legislation that earned her national recognition as a finalist for the 2023 Rare Voice Award in State Advocacy.On September 30th, MI-RARE will host the Michigan Rare Disease State Advocacy Day at the Capitol, a powerful opportunity for patients, families, and caregivers to share their stories with lawmakers and demonstrate that while each condition may be rare, together we are many.To connect go to: MI-rare.org Register for Advocacy Day opens August 4th and ends September 12th, 2025.  There is a travel stipend too. Go to the MI-Rare website.To connect with Leslie Baldwin: leslie@mi-rare.org Please like, subscribe, and comment on our podcasts!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featuredThanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/en

Johnny's World
Jay Perry and Mississippi State Vs Alcorn State

Johnny's World

Play Episode Listen Later Sep 12, 2025 63:33


Send us a textJohnny and BW recap the Bulldog's victory over Arizona State last week.  Bulldog sideline reporter Jay Perry joins Johnny and shares some fun stories from times spent with Dan Mull, Mike Leach and other Bulldog coaches.  He talks about being on the sideline for last weeks win over Arizona State and talks about the rest of the season.  To support our mission to raise funds and awareness for the Cystic Fibrosis foundation be sure to go to Johnnypacker.net and order a fresh bag of coffee.  Support the show

JAMA Medical News: Discussing timely topics in clinical medicine, biomedical sciences, public health, and health policy

Pulmonologist Michael J. Welsh, MD, is the co-recipient of the 2025 Lasker-DeBakey Clinical Medical Research Award for his research on cystic fibrosis. In this interview, he discusses his early clinical encounters with the disease, the foundational work that led to the lifesaving drug Trikafta, and future directions for cystic fibrosis treatment. Related Content: How Cystic Fibrosis Went From Fatal to Treatable Rewriting the Chapter on Cystic Fibrosis

Living With Cystic Fibrosis
Miss America raising hope and awareness for CF

Living With Cystic Fibrosis

Play Episode Listen Later Sep 8, 2025 36:12


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

Tough Girl Podcast
Sophie Pierce - First person with Cystic Fibrosis to row an ocean

Tough Girl Podcast

Play Episode Listen Later Sep 2, 2025 60:01


In this deeply moving and inspiring episode of the Tough Girl Podcast, we're joined by Sophie Pierce, a 32-year-old social worker from Pembrokeshire, West Wales, who made history in March 2025 as the first person with Cystic Fibrosis to row an ocean. Diagnosed at just 3 months old, Sophie has lived with the challenges of a genetic condition that affects her lungs and digestive system and once carried a life expectancy of under 30 years. But Sophie's story is not defined by limitation—it's a bold testament to resilience, courage, and the power of hope. From working in fostering services to hiking the Welsh coast with her dogs, swimming in cold water, and sleeping in her campervan—Sophie has never shied away from living life on her terms.  In this episode, she opens up about the life-changing impact of the Kaftrio drug trial, how she overcame mental health struggles, and what it truly meant to embrace life beyond the horizon by rowing across the Atlantic. She shares the highs and lows of the row: the months of preparation, team dynamics, magical moments at sea, and how it feels to return to "normal life" after an extraordinary adventure. Sophie's message is powerful and universal—you are capable of so much more than you think. If you're looking for inspiration, perspective, and an honest exploration of living—and thriving—with a life-limiting condition, this episode is not to be missed.  New episodes of the Tough Girl Podcast drop every Tuesday at 7 AM (UK time)! Make sure to subscribe so you never miss the inspiring journeys and incredible stories of tough women pushing boundaries.  Do you want to support the Tough Girl Mission to increase the amount of female role models in the media in the world of adventure and physical challenges? Support via Patreon! Join me in making a difference by signing up here: www.patreon.com/toughgirlpodcast.  Your support makes a difference.  Thank you x Show notes Who is Sophie 32 years old Living in Pembrokeshire, West Wales  Working as a social worker in fostering service Living with a genetic health condition - Cystic Fibrosis (CF) March 2025 - becoming the first person with CF to row an ocean What is CF Being born with it and getting diagnosed at 3 months old   Having a shorter lifespan  How CF affects her lungs and digestive system  Living with reduced lung function  Her younger years and how she was treated  Why exercise and being out in the fresh air is actively encouraged Not liking exercise as a child Growing up knowing she had CF and why it was normal Being empowered with CF and how her parents encouraged her Her mum reminding her to stay as well as she could for as long as she could, so she could benefit from treatments in the future.  Learning about her shorter life expectancy and managing those feelings  Adopting a positive attitude - being determined to live her life and not letting CF hold her back  Wanting to make the most of her time  Understanding that time is precious  Not needing a pension, savings or need to put down roots  The help and support available to help manage the mental and emotional challenges Experiencing panic attacks while her health was declining  Working with a psychologist  Using tools from Acceptance and Commitment Therapy (ACT) Feeling frightened of letting the big feelings of sadness in Feeling so sad about living with CF   The drug trial - 5 years ago  Taking the Kaftrio drug  The challenges of winter for CF patients  ‘The Purge' - coughing for 24 hrs How her life and lungs has changed  Trustee for CF Trust  Being asked to row an ocean  Forming a crew of 4 Stumbling blocks and being told no - by the World's Toughest Row Atlantic Dash  Securing the finances and managing the stress of getting to the start line Her biggest fear and worrying about staying well enough to do the row  Getting out on to the ocean. Having electrical issues with the boat  Name of the boat - The Spirit of Bluestone  Magical moments on the Atlantic Ocean  Day 46 coming to the end of the row  Rowing schedule and needing to get extra sleep during the night  The challenges of team dynamics Finding their roles within the group Being the social secretary and bringing fun to the boat The biggest lesson from rowing the ocean You can do so much more than you think you can  Being supported by the right people around you Dealing with the adventure blues How life in weird after rowing an ocean Being in a really exciting place Future challenges?! Words of advice from the CF perspective  Learning to life with CF How to connect with Sophie You are capable of so much more than you think you are Learn to reframe the negative voices in your head   Social Media Instagram @sophiefpierce  @cruisingfree2025   

The Marc Cox Morning Show
Hour 4 - Jack Buck story of him being involved with cystic fibrosis

The Marc Cox Morning Show

Play Episode Listen Later Sep 2, 2025 32:41


Final hour Missouri Lieutenant Governor David Wasinger joins to talk about the special session that Gov. Kehoe has called and more. Marc is joined by Host of Show Me St. Louis Mary Caltrider and Producer Mary Thaier to preview the 30th anniversary of Show Me St. Louis. Ryan Wiggins, Host of Wiggins America talks Marty Makary statement on new Covid booster plus Jack Buck story.

Inside Health
The Revolution in Cystic Fibrosis Care That is Changing Lives

Inside Health

Play Episode Listen Later Sep 2, 2025 28:05


In 1964, the future for children born with Cystic Fibrosis was grim - most faced a life cut tragically short. Today, the majority of people living with CF in the UK are adults, a testament to extraordinary medical progress.We meet Annabelle who lives with Cystic Fibrosis, and once believed she might not see her 18th birthday. And we hear from Dr Imogen Felton, a respiratory consultant at Royal Brompton Hospital, with expertise in cystic fibrosis, who tells us about the therapies crucial to this extended prognosis. The EDITH trial (Early Detection using Information Technology in Health) is testing how AI can help radiologists identify breast cancer at an earlier stage, transforming the future of diagnosis. We speak to Professor Sian Taylor-Philips, Professor of Population Health at the University of Warwick and co-leader of the trial.In 2024, participation in Run Clubs across the UK surged by 64%. But does running in a group lead to better performance? To find out, James laces up for a jog around Hyde Park with the Monday Mood Booster Run Club and speaks with Arran Davis, a postdoctoral researcher at the University of Oxford, who's exploring the links between social interaction and physical activity.Presenter: James Gallagher Producers: Debbie Kilbride, Minnie Harrop & Tom Bonnett Editor: Ilan Goodman Production coordinator: Ishmael Soriano This episode was produced in partnership with The Open University.

Living With Cystic Fibrosis
MRI Fingerprinting: Revolutionizing Care for Rare / Dr. Chris Flask

Living With Cystic Fibrosis

Play Episode Listen Later Sep 1, 2025 36:28


What if a scan could do more than show you a picture, what if it could tell you a story about what's happening inside a child's body, in real time?That's exactly what Dr. Chris Flask is working to make possible.Dr. Flask is a Professor of Radiology, Biomedical Engineering, and Pediatrics at Case Western Reserve University and University Hospitals of Cleveland. He's at the forefront of an exciting transformation in medical imaging, one that could change the way we care for children with rare genetic diseases like cystic fibrosis (CF) and polycystic kidney disease (PKD).“Our goal is to turn imaging, instead of just image creation, into data,” says Dr. Flask. “We want to create numbers. So we can say, this is what's going on in the lungs. And when we put these patients on modulator therapies, we can see a 10 percent improvement in their lung disease. And similar responses in the pancreas, the liver, and the gut. That's our goal—quantifying it through this fingerprinting methodology.”This approach, MRI fingerprinting, is a revolutionary leap forward. Developed over the past decade at Case Western's MRI center, it's fast, accurate, and most importantly for kids: it requires no sedation, no radiation, and no contrast agents. Each image slice takes just 15 seconds, making it safer and more accessible for the most vulnerable patients.Dr. Flask's work is supported by the NIH, the Cystic Fibrosis Foundation, and an extraordinary 42-year collaboration with Siemens MRI. Together, they're paving the way for multi-center clinical trials using this technology to better understand disease progression and therapy outcomes.This episode is all about the intersection of science, innovation, and compassion, and the powerful impact of data-driven care.We're honored to welcome Dr. Flask to the show, although he prefers we call him Chris. You won't want to miss this deep dive into what's next for pediatric imaging and precision medicine.Share with anyone who's passionate about medical innovation, pediatric health, or rare disease research. Please like, subscribe, and comment on our podcasts!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featuredThanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/en

Johnny's World
Mississippi State Football 2025 Season Preview

Johnny's World

Play Episode Listen Later Aug 21, 2025 39:37


Send us a textJohnny and BW are back for a new season of Mississippi State Football.They discuss what they have been doing this summer, why they are doing the show and make their picks and predictions for the 2025 Bulldog Football Season.To support our cause to raise funds and awareness for Cystic Fibrosis go to Johnnypacker.net and order a fresh roasted bag of coffee from High Point Roasters in New Albany MS.  Support the show

Pre-Hospital Care
Training to Breathe: Paul Butler's Fight Against Cystic Fibrosis

Pre-Hospital Care

Play Episode Listen Later Aug 18, 2025 29:35


Today's episode dives into lived experience with cystic fibrosis through the remarkable journey of Paul  Butler. Diagnosed at two and warned he wouldn't reach twenty. Paul's childhood revolved around twice-daily chest physiotherapy, three-daily nebulisers, and a mass of hospital admissions for infections that chipped away at his fragile lungs. By his late teens, the odds felt fixed: average life expectancy for CF hovered around 30, and Paul's lung capacity was already tumbling. Yet everything changed the day he cradled his newborn daughter, Amelia. Faced with a future he refused to miss, Paul overhauled his life, embracing rigorous medication adherence, evidence-informed nutrition, and a training regimen that turned a patient into a personal trainer who now deadlifts triple his body weight.At 45, Paul hasn't been hospitalised in seven years and views fitness not as vanity but as respiratory medicine performed in a gym. In this conversation, we ask: What mindset shifts sustain adherence when statistics feel fatalistic? And what can pre-hospital professionals learn about goal-setting, communication, and empathy from someone who quite literally trains to breathe? You can find Paul Butler on Instagram here: https://www.instagram.com/paulbutler.coach/?hl=enYou can find Paul's website here: https://paulspeakphysique.co.uk/given-just-weeks-to-liveYou can find the inspiration for this interview on the Grind Diaries Podcast here: https://podcasts.apple.com/gb/podcast/episode-16-paul-butler-the-personal-trainer-living/id1736072345?i=1000682838118This episode is brought to you by IndieBase. IndieBase is the smart, simple, and budget-friendly Electronic Patient Record (EPR) system designed specifically for the demands of HEMS and pre-hospital care. Whether you're responding solo, working within a flexible team, or managing care across a larger organisation, IndieBase is built to support you. It runs seamlessly on laptops, tablets, or smartphones, and crucially, it operates offline, ensuring you can document care wherever you are, even in the most remote environments. Developed from the proven platform of HEMSbase by Medic One Systems, IndieBase offers a familiar, intuitive interface with the rock-solid reliability clinicians need. It's ready for everything from festival medical cover to high-acuity critical care transfers. Key features include full integration with all major pre-hospital monitors, case review, and clinical governance modules, making it an ideal solution for teams preparing for CQC registration. A patient feedback module also helps drive service improvement and meaningful engagement. For clinicians working across multiple organisations, IndieBase provides a personal logbook that combines your data and links directly with your existing HEMSbase logbook.IndieBase EPR made simple, wherever you are.Find out more at https://indiebase.net/

MPR Weekly Dose
MPR Weekly Dose Podcast #246 — Device Cleared for Sleep Apnea; Skysona Safety Update; Non-Cystic Fibrosis Bronchiectasis Tx; Animal-Derived Thyroid Meds Safety Update; Synagis Discontinued

MPR Weekly Dose

Play Episode Listen Later Aug 15, 2025 13:03


Nerve stimulation device cleared for sleep apnea; Skysona safety update; new non-cystic fibrosis bronchiectasis treatment; FDA cracks down on animal-derived thyroid meds; RSV therapy to be discontinued.

Pediatric Insights: Advances and Innovations with Children’s Health

This episode focuses on obstructive sleep apnea in children with cystic fibrosis and the critical need for proactive screening.

The Paul W. Smith Show
RFK Jr Cancels $500 Million in mRNA Vaccine Contracts

The Paul W. Smith Show

Play Episode Listen Later Aug 7, 2025 9:29


August 7, 2025 ~ Laura Bonnell, President of the Bonnell Foundation fighting Cystic Fibrosis discusses how RFK Jr cutting $500 million worth of vaccine contract will effect disease research.

Living With Cystic Fibrosis
Sophie Holmes: 36 marathons in 36 days

Living With Cystic Fibrosis

Play Episode Listen Later Aug 4, 2025 36:59


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

I'm Aware That I'm Rare: the phaware® podcast
Episode 531 - John Granton, MD

I'm Aware That I'm Rare: the phaware® podcast

Play Episode Listen Later Jul 29, 2025 10:33


Dr. John Granton, a critical care and transplant physician at Toronto General Hospital, shares his journey in pulmonary hypertension and lung transplantation, detailing the groundbreaking advancements in transplant technology. He discusses the evolution of lung preservation methods, the challenges of chronic rejection, and the hope for longer-lasting transplants. With a passion for improving patient outcomes, Dr. Granton envisions a future where transplant becomes obsolete—replaced by treatments that cure underlying diseases. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Engage for a cure: www.phaware.global/donate #phaware Share your story: info@phaware.com Like, Subscribe and Follow us: www.phawarepodcast.com. @UHN @teamphhope #phawareMD #PHILD #transplant @phacanada

HealthLink On Air
Drug makes living with cystic fibrosis easier

HealthLink On Air

Play Episode Listen Later Jul 24, 2025 27:09


Interview with Christopher Fortner, MD

Living With Cystic Fibrosis
Advocacy in Action: From the Front Lines

Living With Cystic Fibrosis

Play Episode Listen Later Jul 21, 2025 52:28


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

This is Infertility
Beating the Odds: From Cystic Fibrosis to Fatherhood

This is Infertility

Play Episode Listen Later Jul 14, 2025 10:50


Guest: Dustin and Tequila Menken, Progyny Members at TE Connectivity  Host: Dan Bulger, Progyny   “I grew up with an expiration date.”  Dustin Menken was born with cystic fibrosis, a genetic condition that brought him lifelong health challenges and made him part of the 98% of men with CF who are infertile. He never imagined he'd live to see 40, let alone become a father. But with persistence, support from his wife Tequila and a critical fertility benefit from his employer, TE Connectivity, through Progyny, Dustin beat the odds. Again.  In this episode, Dustin and Tequila Menken share their remarkable story: from a childhood spent in hospitals to navigating genetic testing, sperm aspiration, and multiple IVF cycles. They walk us through the setbacks, the emotional toll, and the moment they finally learned they were expecting their daughter, Jannie Bell Allena, who has now arrived healthy and thriving.  Tune into this episode for the Menkens story of resilience, partnership, and the power of access. Behind every fertility journey is a deeply personal fight - one that can be helped with the right support.  For more information, visit Progyny's Podcast page and Progyny's Education page for more resources. Be sure to follow us on Instagram, @ThisisInfertilityPodcast and use the #ThisisInfertility. Have a question, comment, or want to share your story? Email us at thisisinfertility@progyny.com.  

Living With Cystic Fibrosis
The power of yes: it saves lives (Mike Walters and Jason Vandiver)

Living With Cystic Fibrosis

Play Episode Listen Later Jul 7, 2025 47:00


We have a powerful conversation about dedication, innovation, and impact in the cystic fibrosis community in this podcast. I'm joined by two incredible guests from MVW Nutritionals: Mike Walters and Jason Vandiver.Mike Walters is a true pioneer in pharmaceutical business and innovation, with nearly four decades of experience. He began his career at Johnson & Johnson, where he spent 14 years in leadership roles across sales, marketing, and management development. In 1996, Mike launched his first company to help organizations navigate product commercialization in the U.S. Since then, his work in the CF space has been nothing short of groundbreaking. He founded and led Source CF, MVW Nutritionals, and CF Global Services, playing a key role in bringing many standard-of-care treatments to market. A Vanderbilt graduate with degrees in Biochemistry and Chemistry, Mike brings both scientific insight and a deep commitment to rare disease care.Joining him is Jason Vandiver, Chief Operating Officer of MVW Nutritionals. A proud Alabama native, Jason earned his degree in Finance from the University of Alabama at Birmingham and spent 16 years in banking before joining MVW during a time of rapid growth. He now helps lead the multimillion-dollar, family-owned company that's become a global leader in nutritional products for patients with CF and non-CF EPI.In this episode, Mike and Jason share their personal stories, the importance of strong partnerships, and the real challenges patients and families are facing—especially as funding landscapes continue to shift. We explore the power of empathy, the strength of community support, and why transparency in nonprofit operations matters now more than ever.It's a conversation about hope, action, and what's ahead as we work together to support those who need us most.   Please like, subscribe, and comment on our podcasts!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Watch our podcasts on YouTube: https://www.youtube.com/@laurabonnell1136/featuredThanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/en

DKBmed Radio
Cystic Fibrosis Life Transitions

DKBmed Radio

Play Episode Listen Later Jul 3, 2025 13:27


Until the advent of highly effective CFTR modulator medications, cystic fibrosis was considered a pediatric disease, because most individuals did not survive into adulthood. Now, with more adults living with CF than children, priorities must change. In these interviews, we discuss what transitions to a longer life with CF entails: from pediatric to adult care; from the possibilities of motherhood and the need for family planning; from adulthood into older age and the infirmities common to all aging adults. Hosted on Acast. See acast.com/privacy for more information.

Veganish and All Things Healthy
Episode 389 - Wearable monitoring to prevent respiratory events

Veganish and All Things Healthy

Play Episode Listen Later Jun 20, 2025 29:45


Sharon Samjitsingh is an asthma patient and developer of the ADAMM wearable device and Nightingale emergency respiratory care services. She has suffered with asthma her entire life and as a child, fear surrounded her and her family never knowing when the next attack would occur. As an adult she decided to do something to help others monitoring their breathing rhythms, heart rate and symptoms by developing a wearable technology that is taped under the torso and data relayed to a smartphone or computer via wifi that send alerts of an upcoming attack far in advance of its presentation. Her team of on call respiratory therapists then coach the patient with breathing education and behavior modification to reduce likelihood of presentation of an attack. Her results have changed the life of an asthma, COPD, ILD, and Cystic Fibrosis patient from a life caged by fear to one of empowering freedom and self-control. For review of the studies, visit healthcareoriginals.com

CCO Medical Specialties Podcast
Innovations in NCFBE: Latest Advances and Personalization of Treatment

CCO Medical Specialties Podcast

Play Episode Listen Later Jun 20, 2025 15:39


In this podcast, Anne E. O'Donnell, MD, discusses the latest advances and treatment strategies for patients with non–cystic fibrosis bronchiectasis (NCFBE), including:Airway clearance as a foundation of NCFBE managementStrategies to address inflammation and exacerbationsEmerging therapies in clinical developmentHow to individualize treatment to NCFBE phenotypes and endotypesPresenterAnne E. O'Donnell, MDProfessor of MedicineThe Nehemiah and Naomi Cohen Chair in Pulmonology Disease ResearchChief, Division of Pulmonary, Critical Care and Sleep MedicineGeorgetown University Medical CenterWashington, DCProgram page:https://bit.ly/4mZbYsm

CCO Medical Specialties Podcast
Innovations in NCFBE: Understanding the Patient Burden and Best Practices in Diagnostics

CCO Medical Specialties Podcast

Play Episode Listen Later Jun 18, 2025 23:32


In this podcast, Brett M. Elicker, MD, and David E. Griffith, MD, ATSF, FACCP, FRSM, discuss the pathophysiology of non–cystic fibrosis bronchiectasis (NCFBE), the patient burden, and best practices with diagnosing NCFBE, including:The vicious vortex of NCFBE (ie, airway dysfunction, inflammation, infection)Cough as the most significant symptom and burdenImaging bronchiectasis with classic and inflammatory findingsDifferentiating the causes of NCFBE to inform patient carePresentersBrett M. Elicker, MDProfessor of Clinical RadiologyChief, Cardiothoracic Imaging DivisionDepartment of Radiology & Biomedical ImagingUniversity of California, San FranciscoSan Francisco, CaliforniaDavid E. Griffith, MD, ATSF, FACCP, FRSMProfessor of MedicineDivision of Mycobacterial and Respiratory DiseasesDepartment of MedicineNational Jewish HealthDenver, ColoradoProgram page: https://bit.ly/4mZbYsm

CCO Infectious Disease Podcast
Innovations in NCFBE: Understanding the Patient Burden and Best Practices in Diagnostics

CCO Infectious Disease Podcast

Play Episode Listen Later Jun 18, 2025 23:32


In this podcast, Brett M. Elicker, MD, and David E. Griffith, MD, ATSF, FACCP, FRSM, discuss the pathophysiology of non–cystic fibrosis bronchiectasis (NCFBE), the patient burden, and best practices with diagnosing NCFBE, including:The vicious vortex of NCFBE (ie, airway dysfunction, inflammation, infection)Cough as the most significant symptom and burdenImaging bronchiectasis with classic and inflammatory findingsDifferentiating the causes of NCFBE to inform patient carePresentersBrett M. Elicker, MDProfessor of Clinical RadiologyChief, Cardiothoracic Imaging DivisionDepartment of Radiology & Biomedical ImagingUniversity of California, San FranciscoSan Francisco, CaliforniaDavid E. Griffith, MD, ATSF, FACCP, FRSMProfessor of MedicineDivision of Mycobacterial and Respiratory DiseasesDepartment of MedicineNational Jewish HealthDenver, ColoradoProgram page: https://bit.ly/4mZbYsm

Talk of Iowa
How cystic fibrosis has gone from terminal to highly treatable

Talk of Iowa

Play Episode Listen Later Jun 6, 2025 48:04


A look at how cystic fibrosis has become more treatable with a doctor who has studied it for 50 years. And a new folk art museum opens in the Amana Colonies.

Johnny's World
Tanner Allen talks new Mississippi State Coaching Hire and NCAA Tourney

Johnny's World

Play Episode Listen Later Jun 3, 2025 25:20


Send us a textFormer Mississippi State Diamond Dawg National Champion and SEC Player of the Year Tanner Allen is back on Johnny's World. TA talks about NCAA baseball regionals, MSU coaching hire, and gives his predictions on what teams he thinks will make it to Omaha this year. TA also gives us an update on how he's teaching young kids the game of baseball and how his faith in God plays an important role in his journey.To support our mission to raise funds for Cystic Fibrosis be sure to buy a fresh roasted bag of coffee from Johnnypacker.netSupport the show

BJ Shea Daily Experience Podcast -- Official
Daily Podcast pt. 2 - "We raised $230K for CF"

BJ Shea Daily Experience Podcast -- Official

Play Episode Listen Later May 19, 2025 22:59


Beat Migs! And we chat from our live appearance at the Cystic Fibrosis walk.

BJ Shea Daily Experience Podcast -- Official

We emceed the Cystic Fibrosis walk yesterday at Seattle Center, and got to raise over $230K!

Boomer & Gio
Boomer & Gio Podcast (WHOLE SHOW)

Boomer & Gio

Play Episode Listen Later May 14, 2025 158:10


Hour 1 The Indiana Pacers eliminated the Cavaliers and await the Knicks/Celtics winner. With Jayson Tatum having Achilles surgery, the expected Cavaliers/Celtics Eastern Conference Finals is impacted, putting pressure on Jaylen Brown. Evan and Tommy Lugauer are broadcasting from Boston; Evan enjoys sports travel. BT compared himself and Sal to "Mike & The Mad Dog," recalling past Knicks travel. Boomer called Tommy Lugauer the "Shedeur Sanders of WFAN." Jerry's update covered the Pacers' win and Adam Schein's displeasure with the Mavericks getting the top draft pick. In Mets news, Baty homered in a win over the Pirates, despite a Vientos error. Bill Belichick clarified Jordon Hudson's lack of connection to UNC football. The show's final segment discussed logistics for next week's Jersey shore broadcast, including golf and dinner, ruling out Butcher Block in Long Branch. Hour 2 The full NFL schedule is released today. Jerry's update included Evan Roberts' reaction to the Knicks' success as a Nets fan. The Pacers advanced by beating the Cavaliers; Jayson Tatum had Achilles surgery. The Yankees lost to the Mariners in 11 innings. Boomer mentioned a conversation with Dave Sims about skipping the A's series. The Mets won 2-1 against the Pirates with a Baty homer; Carlos Mendoza discussed Baty's play, and Pete Alonso was late to the field one inning. The final segment remembered Katy Monte, who died from Cystic Fibrosis; Boomer knew her well. More NFL games were released, including Chiefs at Cowboys on Thanksgiving Hour 3 Boomer & Gio discussed the awkwardness of asking new parents how they're doing, the Giants' early season schedule including a Week 3 home game against the Chiefs on MNF (Art Stapleton confirmed 3 primetime games), Timothee Chalamet's Knicks fandom, Porzingis discussing Tatum's injury, Yankees losing (Boone ejected), Mets winning (Baty homer), Shawne Merriman liking the Giants' Abdul Carter pick, Trey Hendrickson's uncertain Bengals future due to contract issues, and Michael Jordan joining NBA on NBC in an unclear role. Hour 4 License Plate Guy indicates the Giants may be in Vegas between Christmas and New Year's. Audio played of Brandon Tierney mentioning comparisons to Mike & The Mad Dog. Boomer faced criticism, including from Keith McPherson, for questioning Dave Sims taking off the A's series. A caller suggested betting on the underdog Knicks tonight. Jerry's update covered the Pacers advancing and needing 8 wins for a title, Charles Barkley's humorous response to a question about playing Wilt Chamberlain, Aaron Boone's ejection after Dominguez's strikeout call, and Baty's homer in the Mets' 2-1 win. Bill Belichick sidestepped questions about Jordon Hudson. The Moment of The Day was Tommy Lugauer being called the "Shedeur Sanders of WFAN." The first six difficult Giants games were also revealed.

Boomer & Gio
Waiting For NFL Schedule; Golf Course Dinner; Evan Laments; Tatum Surgery; Mets Win, Yanks Lose (Hour 2)

Boomer & Gio

Play Episode Listen Later May 14, 2025 33:57


The full NFL schedule will be released today. We want to be able to announce one of the games, even if it's a week 10 Jets/Dolphins game. A caller told us just to eat dinner at the golf course we're playing, which is a pretty good idea. Jerry returns for an update and starts with Evan Roberts proclaiming the Knicks success as a Nets fan has him ‘dead'. The Pacers moved on to the conference finals after knocking off the Cavaliers. Jayson Tatum had his achilles surgery. The Yankees lost to the Mariners in 11 and we heard from Max Fried. Boomer said he had a conversation with Dave Sims about him taking off the A's series. The Mets beat the Pirates 2-1 as Baty homered. Carlos Mendoza talked about Baty's recent performance. Pete Alonso was late to get on the field one inning. He might have been in the bathroom. In the final segment of the hour, we remember Katy Monte, who passed away from Cystic Fibrosis. Boomer knew her well and she was a Michael Brennan Award winner. More NFL games have been released and we're getting Chiefs at Cowboys on Thanksgiving.

The Lindsey Elmore Show
Best of Recap Episodes: The Poison Paradox: Fatal Elixirs and Miraculous Cures | Dr. Neil Bradbury

The Lindsey Elmore Show

Play Episode Listen Later Apr 22, 2025 50:12


Dr. Neil Bradbury, a Professor of Physiology and Biophysics at the Chicago Medical School. He received his undergraduate degree from the University of St. Andrews in Scotland in Biochemistry, and his Ph.D. from the Welsh National School of Medicine in Medical Biochemistry. His research has focused on genetic diseases, particularly Cystic Fibrosis, and has spoken on the topic at national and international scientific conferences. He is also an award-winning teacher, and A Taste for Poison is his first book. Topics covered in this episode:Poisonous Plants and ToxinsHistorical Use of PoisonsAtropine PoisoningDisguising PoisonsDetection of PoisonsModern Cases of PoisoningTherapeutic Index of SubstancesErgot PoisoningPolonium PoisoningRadioactive MaterialsPolitical AssassinationsAllergic ReactionsMisconceptions About ChemicalsIndustrialized FarmingDark History and TourismTo learn more about Neil Bradbury and his work, head over to https://neilbradbury.org/Poison Help Line (1-800-222-1222)Become a supporter of this podcast: https://www.spreaker.com/podcast/the-lindsey-elmore-show--5952903/support.