Latest Fibrosis Podcast Episodes
Erectile Data: How a Ring Can Save Your Life
Sickboy - June 26, 2024 04:10 - 1 hour ★★★★★ - 463 ratingsWho knew a ring could hold the secret to unlocking better health and pleasure? Buckle up folks, This week Dr. Elliot Justin, CEO and founder of FirmTech, introduces the world's first objective monitor for men's erectile fitness—a discreet, wearable cock ring that tracks nocturnal erections to pr...
Remembering Matt McCloskey of Take a Breather
Living With Cystic Fibrosis - June 24, 2024 04:00 - 37 minutes ★★★★★ - 20 ratingsShortly after we did this podcast Matt died from complications of cystic fibrosis. With permission from his sisters, and dear friend Jennifer Bleecher (featured in this podcast) we are now airing this podcast to shine a light about what a great man Matt was. He speaks in this podcast about conc...
Thicc Boy With a Thick Heart - Hypertrophic cardiomyopathy (HCM)
Sickboy - June 19, 2024 04:10 - 1 hour ★★★★★ - 463 ratingsNot all tackles happen on the field. Che Morales, once on the brink of a promising CFL career, found his life upended by a surprising diagnosis. What started as shortness of breath, initially thought to be COVID, led to the shocking discovery of Hypertrophic Cardiomyopathy (HCM). This episode de...
The Fearless Vagina: Ellen Dolgen
Living With Cystic Fibrosis - June 17, 2024 04:00 - 1 hour ★★★★★ - 20 ratingsAs people with cystic fibrosis live longer, with a life expectancy currently at about 56 years old, many women with CF will be going through menopause. I recently spoke to doctors at a hospital gathering, and recommended they speak to women with CF about menopause. They agreed. It's time. The...
The Domestic Assault That Shocked The World - Denise Chong
Sickboy - June 12, 2024 13:10 - 1 hour ★★★★★ - 463 ratingsThey say the pen is mightier than the sword, but sometimes, it illuminates the darkness within. In this episode, the fellas are joined by Denise Chong, the best selling author, to chat about her latest book, Out of Darkness. This gripping narrative follows the harrowing journey of Rumana Monzur,...
Dr. Caleb Bupp, Rare Genius (in our opinion)
Living With Cystic Fibrosis - June 10, 2024 04:00 - 43 minutes ★★★★★ - 20 ratingsDr. Caleb Bupp. In my opinion. A scientific star. He is a most humble human, but has every right to brag, but he never would. I do believe he's a genius. You will love this podcast. We talk about rare disease, his family and how he discovered and helped families who had no rare disease answer...
“I was fat shamed by the Dalai Lama”: Johann Hari on Ozempic
Sickboy - June 05, 2024 04:10 - 1 hour ★★★★★ - 463 ratingsOH OH OH OZEMPIC! You knOooOooOoow, never believe it’s not so. This week the fellas get to check off a long time dream guest. Johann Hari, a wildly successful and beloved author and journalist, who pops by the studio to do a deep dive into the new form of weight loss drugs that are taking the wo...
Cambrey Vasconez White - rare mutations
Living With Cystic Fibrosis - June 03, 2024 04:00 - 38 minutes ★★★★★ - 20 ratingsCambrey Vasconez White is the mother of toddler Rowland, who has Cystic Fibrosis. If you listened to our podcast with Vicky Maldonado, they have similar struggles. Cambrey is also working to find an equitable approach to rare mutations in the U.S. and Canada. These two women connected, as you...
CYSTIC FIBROSIS IS NOT YET CURED!
Sickboy - May 29, 2024 04:10 - 1 hour ★★★★★ - 463 ratingsClarification: The median age of survival in Canadians born with cystic fibrosis is 60 years of age. The median age of death in Canadians with CF is 37 years of age. When science fiction becomes a medical reality, the journey is anything but simple. Kelly Grover, CEO of Cystic Fibrosis Canada, ...
Brandi Berry, Chidlren's Special Health Care Services Prgrm
Living With Cystic Fibrosis - May 27, 2024 04:00 - 39 minutes ★★★★★ - 20 ratingsDid you know most states have programs for CF families, and they don’t have to do with your income? Michigan has one of the best programs in the Country. It’s called Children’s Special Healthcare and acts as a secondary insurance to pediatric and adult patients. Brandi Berry tells us all about i...
From Daring Dreams to Digestive Drama - Crohn's Disease
Sickboy - May 22, 2024 04:10 - 1 hour ★★★★★ - 463 ratingsThis week is all about 4 things. Ambition, Resiliency, Adventure and Poop! Our guest Bradley lives with Crohn's disease and despite facing huge health challenges (including a horrific and lengthy hospital admission) he’s done some wildly impressive things. Bradley crossed the Sahara Desert, swam...
Dr. Bhanu Jena, another CF modulator on the horizon?
Living With Cystic Fibrosis - May 20, 2024 04:00 - 35 minutes ★★★★★ - 20 ratingsA new CF modulator could be on the horizon. Professor Dr. Bhanu Jena is exciting to tell us all about it. Dr. Jena was born in a small town in Odisha, India. He got his love for science and medicine from his father and grandfather. He majored in Chemistry, Zoology, and Botany at BJB College in...
Black Man in a White Coat Fighting For Mental Health
Sickboy - May 15, 2024 13:35 - 1 hour ★★★★★ - 463 ratingsHumor isn't just medicine for the soul; it's also a scalpel that dissects the complex anatomy of our mental and physical health. This week Jer and Tay are joined by best-selling author and psychiatrist, Dr. Damon Tweedy. From discussing the stigmas that shadow mental health in marginalized com...
Experiences With Oral SERDs for HR+/HER2- Metastatic Breast Cancer
CCO Oncology Podcast - May 14, 2024 04:00 - 25 minutesIn this episode, Manali Bhave, MD; Annalise Labatut, PharmD, BCOP; and nurse practitioner Jamie L. Carroll, CNP, APRN, MSN, begin by discussing the landmark EMERALD study that led to FDA approval of elacestrant, the first oral selective estrogen receptor degrader (SERD) for treatment of hormone ...
The Final 10 percent
Living With Cystic Fibrosis - May 13, 2024 04:00 - 38 minutes ★★★★★ - 20 ratingsApproximately 10 percent of the CF population is waiting for a CF modulator drug that will help them by correcting the underlying condition of their disease. Current modulator drugs help more common CF mutations. Emily Kramer Golinkoff is one of the people who doesn't have a CF modulator that ...
From Transplant List to Baby Bliss with Alyssa Hicks
Pre to Post Transplant - May 09, 2024 04:02 - 1 hour ★★★★★ - 29 ratingsIn this episode, Alyssa Hicks shares her journey about her kidney transplant. She talks about all the challenges she had to overcome throughout her journey, one being having a baby while on dialysis. With so many other obstacles, she is here to tell her inspirational story. Visit the Pre to ...
The NHL Has A Head Trauma Problem
Sickboy - May 08, 2024 04:10 - 1 hour ★★★★★ - 463 ratingsWhen the game ends but the battle just begins, former NHL player Daniel Carcillo lays bare the hard-hitting truth about sports concussions and the healing journey beyond the rink. Carcillo joins the fellas for a compelling chat surrounding his intense struggle with mental health following repeti...
Applying the Latest Evidence and NCCN Guideline Recommendations in Chronic Lymphocytic Leukemia/Small Lymphocytic Lymphoma
CCO Oncology Podcast - May 07, 2024 16:44 - 47 minutesIn this episode, Danielle M. Brander, MD; Deborah Stephens, DO; and Brian Hill, MD, PhD, discuss key aspects of the NCCN CLL guidelines and share strategies for applying these recommendations in your clinical practice to optimize treatment and outcomes. The greater discussion addresses: Optimal...
Dr. Mitch Drumm - CF Pioneer (and hero to CF community)
Living With Cystic Fibrosis - May 06, 2024 04:00 - 44 minutes ★★★★★ - 20 ratingsLiving legends. One of them is Dr. Mitch Drumm. He was part of the team with Dr. Francis Collins who discovered the gene that cause CF. They were all at the University of Michigan. You’ll hear the connection Laura and Mitch have, and they didn’t know it until this podcast! Dr. Drumm is a living ...
Dr. Mitch Drum - CF Pioneer
Living With Cystic Fibrosis - May 06, 2024 04:00 - 44 minutes ★★★★★ - 20 ratingsLiving legends. One of them is Dr. Mitch Drumm. He was part of the team with Dr. Francis Collins who discovered the gene that cause CF. They were all at the University of Michigan. You’ll hear the connection Laura and Mitch have, and they didn’t know it until this podcast! Dr. Drumm is a living ...
What Happens When One Conjoined Twin Dies?
Sickboy - May 01, 2024 04:10 - 39 minutes ★★★★★ - 463 ratingsIn a dance designed for two, what happens when the music stops for one? This week Jer and Tay go OG FGF mode. After introducing the newest member of the team, Haeley, Jer delves into the complex world of conjoined twins, particularly focusing on the rare and heartbreaking scenario where one twin...
The unquestioned support of patient organizations
Journeys through pulmonary fibrosis - April 30, 2024 14:43 - 29 minutes ★★★★★ - 5 ratingsIn this episode of the ‘Journeys Through Pulmonary Fibrosis’ podcast, our host Steve Jones sits down with two guests from the USA and Norway to discuss the importance of connecting with people who live with pulmonary fibrosis at different stages of their journey. They also discuss the many differ...
How to strive in life again
Journeys through pulmonary fibrosis - April 29, 2024 15:50 - 37 minutes ★★★★★ - 5 ratingsIn this episode of the ‘Journeys Through Pulmonary Fibrosis’ podcast, our guests share how family, friends and support groups are invaluable to their journey, often providing that much needed support and hope for those living with pulmonary fibrosis and their loved ones. Hear more about the ongoi...
Dr Ryan Hadley - Lung Transplants
Living With Cystic Fibrosis - April 29, 2024 04:00 - 27 minutes ★★★★★ - 20 ratingsDo you know what is needed before you have a lung transplant? Or even how it works? More and more adult CF clinics are explaining the details to adult patients, but if you're a CF parent, there is a lot you may not know. We welcome Dr. Ryan Hadley. Dr. Hadley is at Corewell health in Grand R...
Legally Blind or Faking It? - Retinitis Pigmentosa
Sickboy - April 24, 2024 04:10 - 1 hour ★★★★★ - 463 ratingsSometimes, the world we see isn't just defined by light and shadows, but by the stories we tell and the voices we hear. Mara Hutchinson offers the fellas a candid glimpse into her life with Retinitis Pigmentosa (RP), a rare eye disease that affects the retina. She’s lived a journey marked not ju...
Laura and Beth talk about what makes a Foundation work!
Living With Cystic Fibrosis - April 22, 2024 04:00 - 40 minutes ★★★★★ - 20 ratingsEveryone always asks me "What does it take to run a Foundation?" So I thought I would explain some of the different aspects of funny and challenging parts of running a Foundation. Please join me with my friend Beth Vanstone who asks me all sorts of questions about what running a Foundation is ...
The Platinum Rule: Advance Care Planning
Sickboy - April 17, 2024 08:10 - 59 minutes ★★★★★ - 463 ratingsLife is a storyboard, and every chapter counts, especially those we write in advance. Karine Diedrich, the Director of Advance Care Planning at the Canadian Hospice Palliative Care Association (CHPCA) unravels the threads of advance care planning—a blueprint for future healthcare that aligns dee...
Being Thankful on Thanksgiving Has a Whole New meaning with Pamela Sherman
Pre to Post Transplant - April 15, 2024 18:18 - 44 minutes ★★★★★ - 29 ratingsIn this episode, Pamela tells her story of receiving two heart transplants just 11 months apart. She shares what it was really like going through this process, thinking she knew what to expect, only to find out otherwise. With special guest, Meatball! Find more episodes on the website at www....
Rabbi Moskowitz, embracing the Queer community
Living With Cystic Fibrosis - April 15, 2024 13:07 - 58 minutes ★★★★★ - 20 ratingsHe’s been arrested. He’s CIS gender with a wife and kids. Rabbi Mike Moskowitz is also an orthodox Jew’is and he is one of the biggest supporters of the queer community. Rabbi Moskowitz is the Scholar-in-Residence for Trans and Queer Jewish Studies at Congregation Beit Simchat Torah, the world’s...
A Luddite's Guide to Conquering Complex Regional Pain Syndrome
Sickboy - April 10, 2024 04:10 - 1 hour ★★★★★ - 463 ratingsIn the analog corners of Utah, Libby Slem navigates the digital age with a Luddite's charm and a warrior's grit, facing Complex Regional Pain Syndrome (CRPS). This isn't your everyday pain; it's a journey through a rare nerve disease that transforms every facet of life, from motherhood's joys an...
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