Podcasts about Patient advocacy

EPISODE DESCRIPTIONLisa Shufro is the storyteller's storyteller. A musician turned innovation strategist, TEDMed curator, and unapologetic truth-teller, Lisa doesn't just craft narratives—she engineers constellations out of chaos. We go way back to the early TEDMed days, where she taught doctors, scientists, and technocrats how not to bore an audience to death. In this episode, we talk about how storytelling in healthcare has been weaponized, misunderstood, misused, and still holds the power to change lives—if done right. Lisa challenges the idea that storytelling should be persuasive and instead argues it should be connective. We get into AI, the myth of objectivity, musical scars, Richard Simmons, the Vegas healthcare experiment, and the real reason your startup pitch is still trash. If you've ever been told to “just tell your story,” this episode is the permission slip to do it your way. With a bow, not a violin.RELATED LINKSLisa Shufro's WebsiteLinkedInSuper Curious ArchiveEight Principles for Storytelling in InnovationStoryCorps InterviewCoursera Instructor ProfileWhatMatters ProjectFEEDBACKLike this episode? Rate and review Out of Patients on your favorite podcast platform. For guest suggestions or sponsorship inquiries, email podcast@matthewzachary.com.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Courtney Turich shares the journey of Cooler Heads, the startup behind a scalp cooling device that helps chemo patients keep their hair and dignity.   From early challenges to reaching over 100 infusion centers, she reveals how awareness, advocacy, and social media-fueled their growth.   We explore the emotional impact of scalp cooling, the barriers to oncologist adoption, and the company's commitment to patient education.   Courtney also offers career advice for breaking into medical sales, thriving in startups, and leading with purpose.   This is a must-listen for anyone who wants to build a mission-driven career, create a real impact in healthcare, or understand what it takes to grow a successful medical startup.   Connect with Courtney: LinkedIn Connect with Me: LinkedIn   Love the show? Subscribe, rate, review, and share! Here's How » Want to connect with past guests and access exclusive Q&As? Join our EYS Skool Community today!

What happens when you blend the soul of Mr. Rogers, the boldness of RuPaul, and just a pinch of Carrie Bradshaw? You get Sally Wolf.She's a Harvard and Stanford powerhouse who ditched corporate media to help people actually flourish at work and in life—because cancer kicked her ass and she kicked it back, with a pole dance routine on Netflix for good measure.In this episode, we unpack what it means to live (really live) with metastatic breast cancer. We talk about the toxic PR machine behind "pink ribbon" cancer, how the healthcare system gaslights survivors when treatment ends, and why spreadsheets and dance classes saved her sanity. Sally doesn't just survive. She rewrites the script, calls out the BS, and shows up in full color.If you've ever asked “Why me?”—or refused to—this one's for you.RELATED LINKS:Sally Wolf's WebsiteLinkedInInstagramCosmopolitan Essay: "What It's Like to Have the 'Good' Cancer"Oprah Daily Article: "Five Things I Wish Everyone Understood About My Metastatic Breast Cancer Diagnosis"Allure Photo ShootThe Story of Our Trauma PodcastFEEDBACK:Like this episode? Rate and review Out of Patients on your favorite podcast platform. For guest suggestions or sponsorship inquiries, email podcast@matthewzachary.com.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

On this episode, Tania Simoncelli (Vice President, Translational Impact and Engagement, Chan Zuckerberg Initiative) and Nasha Fitter (Co-founder & CBO, Citizen Health and Co-founder & CEO, FOXG1 Research Foundation) join forces to discuss how rare disease patient advocacy has transformed over time and how the biopharmaceutical industry should adapt to better meet the needs of today's patients. They dive deeper into the evolution of rare disease patient advocacy groups, why industry must move beyond the hyperfocus on “blockbuster drugs” to make progress in rare disease research, and how advancements in rare disease treatments can benefit the clinical research ecosystem for all.

In this episode of the Manta Cares's Patient from Hell Podcast Club, host Mike Lynn engages with Sheila Goodrow, a metastatic breast cancer advocate, to discuss the importance of mental health resources for cancer patients. They explore Sheila's personal journey with cancer, the challenges of accessing mental health care, and the role of advocacy in healing. The conversation emphasizes the need for comprehensive support systems for patients and caregivers alike, highlighting the significance of mental wellness in the cancer journey.This Podcast Club accompanies Patient from Hell podcast Episode 84: Managing Insomnia and Mental Health in Cancer Care with Dr. Cara Bohon.00:00 Introduction to Patient Advocacy and Podcast Goals02:00 Sheila's Journey with Metastatic Breast Cancer03:52 Mental Health Challenges in Cancer Care09:46 Exploring Therapy and Mental Health Resources14:03 Accessibility of Mental Health Services for Patients17:58 The Role of Advocacy in Personal Healing19:59 Conclusion and Final Thoughts on WellnessConnect with Us:Enjoyed this episode? Make sure to subscribe, rate, and review! Follow us on Instagram, Facebook, or Linkedin @mantacares and visit our website at mantacares.com for more episodes and updates.Disclaimer:All content and information provided in connection with Manta Cares is solely intended for informational and educational purposes only. This content and information is not intended to be a substitute for medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.This episode was supported by an award from the Patient-Centered Outcomes Research Institute.

In this episode of the Manta Cares Patient from Hell Podcast Club, host Mike Lynn engages with Brenda Elveen, a breast cancer survivor and patient advocate. They discuss the challenges faced by cancer patients, including navigating the healthcare system, the impact of insurance on treatment options, and the importance of community support. Brenda shares her personal journey through cancer treatment and emphasizes the need for patient empowerment and effective communication with loved ones. The conversation highlights the transformative power of advocacy and the positive outcomes that can arise from difficult experiences.This Podcast Club accompanies Patient from Hell podcast Episode 91 "Personalized Oncology: General Surgeon Discusses Modern Breast Cancer Treatment" with Dr. Anitha Srinivasian.00:00 Introduction to Patient Advocacy and Personal Stories02:52 Navigating the Cancer Diagnosis Journey05:51 The Impact of Insurance on Treatment Decisions09:14 Understanding Treatment Options and Patient Empowerment11:57 The Role of Community and Support in Cancer Care15:02 The Importance of Communication with Loved Ones18:01 Finding Purpose in Advocacy and Personal GrowthConnect with Us:Enjoyed this episode? Make sure to subscribe, rate, and review! Follow us on Instagram, Facebook, or Linkedin @mantacares and visit our website at mantacares.com for more episodes and updates.Disclaimer:All content and information provided in connection with Manta Cares is solely intended for informational and educational purposes only. This content and information is not intended to be a substitute for medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.This episode was supported by an award from the Patient-Centered Outcomes Research Institute.

In our Patient from Hell Podcast Club episode, Ashley Dedman, vice president of mission delivery at Living Beyond Breast Cancer. They discuss the importance of patient advocacy, particularly in the context of breast cancer and DCIS (ductal carcinoma in situ). Ashley shares her personal journey with cancer as a caregiver and advocate, emphasizing the need for timely information and emotional support for patients and their families. The conversation highlights the evolving landscape of cancer treatment, the significance of understanding individual experiences, and the critical role of mental health in navigating cancer journeys.Chapters00:00 Introduction to Patient Advocacy and Podcast Goals03:03 Understanding DCIS: A Deep Dive into Breast Cancer06:03 Personal Stories: The Impact of Cancer on Families12:06 The Role of Advocacy in Cancer Care17:51 Navigating Treatment Decisions and Patient Empowerment24:06 Mental Health and Support in Cancer JourneysConnect with Us:Enjoyed this episode? Make sure to subscribe, rate, and review! Follow us on Instagram, Facebook, or Linkedin @mantacares and visit our website at mantacares.com for more episodes and updates.Listen Elsewhere: Website: https://mantacares.com/pages/podcast?srsltid=AfmBOopEP5GJ-Wd2nL-HYAInrwerIVhyJw67salKT-r9Qb_gadBvbHie YouTube: https://youtu.be/2SxvTqJht34?si=2U_98RfJJeWkTaT3 Spotify: https://open.spotify.com/episode/3TR1lFLtf6em5YyKtlWy2L?si=6ma-9g_wTIWTCLmHiHF_Aw Apple: https://podcasts.apple.com/us/podcast/navigating-cervical-cancer-screening-surgery-and/id1622669098?i=1000706666920 Disclaimer:All content and information provided in connection with Manta Cares is solely intended for informational and educational purposes only. This content and information is not intended to be a substitute for medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.This episode was supported by an award from the Patient-Centered Outcomes Research Institute.

In this conversation, Dr. Jannine Krause sits down with Jennifer Brower as she shares her personal journey through chronic illness, including Lyme disease, mold toxicity, and the aftermath of COVID-19. She discusses the challenges of misdiagnosis and the emotional toll of navigating the healthcare system. Jennifer emphasizes the importance of finding the right healing modalities, building a supportive community, and advocating for oneself in medical settings. She also highlights the significance of emotional health and the need for personalized approaches to wellness. We dive deep into:

On this episode of Cheat Codes, guest host Janie Davis, Director of Patient Advocacy at Agios Pharmaceuticals, is joined by sickle cell advocates Teonna Woolford, Cassandra Trimnell, and Rae Blaylark discuss the challenges and rewards of sickle cell advocacy. They delve into personal journeys, the nuances of advocacy, and the importance of self-care. The conversation highlights the power of community, the significance of setting boundaries, and the need for therapeutic support. The advocates also reflect on the impact of their work and offer advice for the next generation of sickle cell advocates.   SHOW DESCRIPTION Cheat Codes is intended for patients, caregivers, providers, and the greater community of people who are impacted by Sickle Cell Disease.  Each episode, Cheat Codes strives to provide listeners with critical education, the latest scientific updates, and voices from the Sickle Cell community.     Join an inclusive community and build connections with other hemolytic anemia allies by following @AllyVoicesRising on Instagram.   TRANSPARENCY STATEMENT  Cheat Codes: A Sickle Cell Podcast is made possible by Agios Pharmaceuticals Inc. Visit Agios.com to learn more. The following Agios-supported programs are intended for informational and educational purposes only and are not intended as medical advice. Please speak with your healthcare professional before making any treatment decisions. Host and guests featured in this episode have been compensated for their time.  

Episode DescriptionAudra Moran is the President and CEO of OCRA—Ovarian Cancer Research Alliance—which means she spends her days doing things most of us wouldn't survive five minutes doing: merging nonprofits, leading national patient support programs, funding lifesaving research, surviving pharma grant hell, and trying to reach every woman in America who might be slipping through the cracks. We talk about her time working with the Helen Keller National Center (yes, she knows finger spelling), her accidental journey into cancer nonprofit leadership, the weirdness of dermoid cysts, the ridiculousness of writing grants, and the absolute hellscape of diagnosis delay. Oh, and the fallopian tubes. You'll never look at them the same way again.This episode is funny, raw, deeply personal, and loaded with Gen X movie references and random facts about Paul Rudd, Terminator 2, and flipbook apps at 3am. Audra drops wisdom, humility, and a few hot takes on AI, advocacy, and what it really means to lead when the boulder keeps rolling downhill.RELATED LINKSAudra Moran on LinkedInOvarian Cancer Research Alliance (OCRA)Audra's profile on OCRACURE Today interview: Leading the FightOCRA + AI & Data: Overlooked PodcastFEEDBACKLike this episode? Rate and review Out of Patients on your favorite podcast platform. For guest suggestions or sponsorship inquiries, email podcast@matthewzachary.comSee Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Getting a diagnosis should feel like the beginning of healing—but for many living with chronic illness, it's just the start of a much longer, messier road.In this episode, Lyndsay Soprano sits down with Angel Parker from the Netflix documentary Diagnosis, for a raw, honest conversation about what it really means to live with chronic pain and illness. From the emotional exhaustion of being dismissed by doctors to the quiet heartbreak of not being believed by the people closest to you, this conversation doesn't shy away from the hard stuff. They talk about what happens when your body betrays you, when your mind starts to spiral, and when your world gets smaller because of pain.But this isn't just about struggle—it's about survival. About building your own village when the system fails you. About learning to advocate for yourself, even when your voice shakes. About navigating the anxiety, the food triggers, the family dynamics, and the invisible weight you carry every single day.Lyndsay and Angel also touch on the global gaps in healthcare, the mental toll of feeling alone in your illness, and the little things—like community, connection, and shared experience—that make all the difference. It's not tied up in a bow. It's real. And it just might make you feel a little more seen.Find Angel Parker Online Here:Instagram: @angelbangelllInstagram: @evolvetherapylvFind The Pain Game Podcast Online Here:Website: thepaingamepodcast.comInstagram: @thepaingamepodcastFacebook: The Pain Game PodcastLinkedIn: Lyndsay SopranoEpisode Highlights:(00:00) Introduction to Chronic Pain and Healing(02:35) The Journey to Diagnosis(10:18) Living with Chronic Pain: Personal Stories(16:45) Mental Health and Chronic Illness(20:32) Navigating Healthcare Systems(26:49) Understanding CPT2 and Dietary Needs(31:22) The Power of Community and Support(37:23) Final Thoughts and Encouragement

Christine Verini is a pharmacist by training, a nonprofit CEO by title, and an unapologetic empath by design. She now leads CancerCare, one of the oldest, least-known, and most impactful organizations in the country that actually helps real cancer patients deal with the practical garbage no one likes to talk about—like paying rent, affording a ride to chemo, or feeding their kids.We talk about her career pivot from industry to impact, what it's like trying to scale empathy without losing your soul, and the daily gut-punch of knowing there are millions of people who still have no idea that CancerCare exists. Christine gets real about leadership, advocacy, burnout, and why being “pan-cancer” matters more than ever in a world obsessed with biomarkers, buckets, and branding.She also dishes on what AI gets dead wrong, what patients actually want when they call for help, and why “ghosting” someone with cancer is still a thing. Buckle up. This one's packed with heart, brains, and a little righteous rage.RELATED LINKSCancerCareChristine Verini on LinkedInChristine's CEO Announcement – PR NewswireCancer Health 25: Christine VeriniChristine on HealthyWomenBIO Convention Speaker ProfileFEEDBACKLike this episode? Rate and review Out of Patients on your favorite podcast platform. For guest suggestions or sponsorship inquiries, email podcast@matthewzachary.comSee Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

What do you do when your pain becomes so intense, so overwhelming, that the only place left to turn is the emergency room—and even that doesn't feel safe?In this raw and revealing episode, Lyndsay Soprano opens up about her own lived experience with chronic pain, including CRPS and Lyme disease, and the harsh reality of seeking help in an emergency medical system that often doesn't know what to do with people like her. The ER isn't always a place of comfort—it can be cold, dismissive, and downright dangerous when you're already at your breaking point.She's joined by Dr. Jim Keany, an emergency physician who brings honesty and insight to the conversation. Together, they unpack the disconnect between chronic pain patients and emergency care providers, the emotional toll of pain that goes far beyond the physical, and the desperate need for a healthcare system that sees people as whole humans—not just symptoms.Lyndsay and Dr. Keany discuss the deeper layers of chronic pain—how trauma can amplify it, how isolation can worsen it, and how the system often misses the mark. They touch on the struggles of medication management, the power of journaling, and how tools like hypnosis can actually help. Most of all, they stress the importance of treating the whole person, not just the symptoms. With empathy, advocacy, and even a little hope, healing becomes more possible.If you've ever felt dismissed, gaslit, or broken by your pain—or by the people meant to help you, this episode is for you.Find Dr. Jim Keany Online Here:LinkedIn: Dr. Jim KeanyFind The Pain Game Podcast Online Here:Website: thepaingamepodcast.comInstagram: @thepaingamepodcastFacebook: The Pain Game PodcastEpisode Highlights:(00:00) Introduction to Chronic Pain and Trauma(03:04) Emergency Situations and Pain Management(05:54) The Role of Emergency Medicine in Chronic Pain(08:48) Understanding Pain: Psychological and Physical Aspects(12:00) Navigating the Healthcare System(14:57) Alternative Pain Management Strategies(17:51) The Importance of Whole Person Care(21:00) Supporting Loved Ones in Chronic Pain(23:54) The Role of Journaling in Pain Management(26:50) Global Perspectives on Pain and Suffering(30:03) Hope and Future in Pain Management

Equity is not just a box to check; it is the framework for lasting change. In this week's BackTable podcast, guest host Dr. Veronica Lerner speaks with Dr. Ebony Carter, a high-risk obstetrician and Division Director for Maternal-Fetal Medicine at the University of North Carolina at Chapel Hill. Dr. Carter shares insights into her career journey, which was influenced by her mother's activism in health equity, her work on reproductive health disparities, and community engagement projects. ---SYNPOSISThe conversation underscores the importance of patient participation and agency in clinical decision-making. Dr. Carter and Dr. Lerner also discuss the development of an equity rubric for peer-reviewed journals, highlighting the need for inclusive and intentional research practices. They explore practical applications of the rubric, including the proper acknowledgment of contributors to foundational concepts. The episode further delves into Dr. Carter's mentorship initiatives at the Green Journal and her guiding philosophy of pursuing impactful, community-driven work rooted in passion and purpose.---TIMESTAMPS00:00 - Introduction02:06 - Dr. Carter's Journey and Inspiration05:19 - Community Engagement and Health Equity06:19 - Patient Advocacy and Shared Decision Making08:54 - Collaborative Research and Community Partnerships16:58 - Addressing Bias in Medical Practice22:12 - Equity in Academic Publishing28:26 - Diversifying the Peer Review Pool30:33 - Creating and Implementing the Equity Rubric31:17 - The Impact and Application of the Equity Rubric33:31 - Personal Reflections on Equity and Research35:25 - Citing Foundational Work38:48 - Mentorship and Training Future Leaders47:05 - Career Transitions and Future Goals52:36 - Final Thoughts and Advice for Aspiring Professionals---RESOURCESFull Equity Rubric:https://journals.lww.com/greenjournal/Documents/OnG_Equity_Rubric_1.pdf ​Equity Rubric Introduction Video:https://youtu.be/Jh5_L-pYkuE?si=JREjSSCr98jqjVVB Equity Rubric Introduction Video Slide Deck:https://journals.lww.com/greenjournal/Documents/Green%20Journal%20Equity%20Rubric%20YouTube_final_2022_01_16%20(Slides).pdf

BrainStorm wants to hear from you! Send us a text.in this episode of the "BrainStorm" by UsAgainstAlzheimer's, George Vradenburg, Co-founder and Chairman of UsAgainstAlzheimer's, and Russ Paulsen, the organization's Chief Operating Officer, discuss the impact of the Trump administration's policies on Alzheimer's research with host Meryl Comer. The conversation highlights the systematic dismantling of the National Institutes of Health (NIH) and other critical agencies, which threatens to undermine Alzheimer's research and public health. Vradenburg and Paulsen express concerns about the lack of transparency in the reorganization and the potential negative effects on drug reviews and approvals due to significant cuts at the FDA. They highlight the importance of protecting key programs that support seniors and the potential global impact of these policy changes. Despite the challenges, both Paulsen and Vradenburg are optimism about scientific advances in diagnosing and treating Alzheimer's, including the development of blood tests and new treatments. Hear the call to action for listeners to advocate for continued support for Alzheimer's research and to contact their members of Congress to ensure that funding remains a priority. This is a must listen episode!  This episode is sponsored by Genentech.Support the show

Send us a textMuffy Walker ( https://www.muffywalker.com/ ) is a psychiatric nurse with 45 years of experience, the founder of the International Bipolar Foundation, ( https://ibpf.org/ - an organization focused on raising awareness and reducing stigma around mental health ), a dedicated Alzheimer's caregiver, and an author with a passion for crafting compelling fiction that educates, inspires and sheds light on important topics, sparking meaningful conversations and fostering greater understanding. Muffy's debut novel, Memory Weavers ( https://www.amazon.com/Memory-Weavers-Muffy-Walker/dp/B0DT7V6K3L ), a poignant and timely work of women's fiction exploring memory, trauma, and the realities of caregiving, was just released April 8, 2025, with her other titles including a children's book, The Great Jungle Talent Show, as well as Healthy Living with Bipolar Disorder, written for both people living with bipolar disorder and their caregivers.Muffy holds a Master of Science in Psychiatric Nursing from the University of Pennsylvania, and an MBA from University of California, Irvine, and has written extensively on mental health topics, contributing many chapters, guides, and newspaper articles to the field.Muffy has also has served on a plethora of boards including Children's Hospital, Kids Korps USA, NeighborHelp, and ChildHelp USA.#MuffyWalker #MemoryWeavers #AlzheimersCaregiving #InternationalBipolarFoundation #PsychiatricNursing #Dementia #PTSD #Empathy #Fiction #PatientAdvocacy #HusseiniManji #ScottSmall #CraigVenter #JohnCReed #ProgressPotentialAndPossibilities #IraPastor #Podcast #Podcaster #ViralPodcast #STEM #Innovation #Technology #Science #ResearchSupport the show

Patient Advocacy in the Hospital and Society, with Ashlee Murray, MD, MPH 

On this episode, guest host Janie Davis, Director of Patient Advocacy at Agios Pharmaceuticals, discusses the Life Stage Model initiative with patient advocacy leaders, Tamara Scriver and Alejandra Watson. They delve into the work of the PKD Advocacy Advisory Council (AAC) and how it addresses the unmet needs of the community. The conversation highlights the development of the Life Stage Model, which categorizes the physical and psychosocial symptoms of PKD across different life stages.    SHOW DESCRIPTION Just Listen: Voices of PK Deficiency is a podcast about Pyruvate Kinase Deficiency and is intended for patients, caregivers, providers, and the greater community of people who are impacted by PKD.  Each episode, Just Listen: Voices of PK Deficiency strives to provide listeners with critical education, the latest scientific updates, and voices from the PKD community.  Learn more about PKD by visiting KnowPKDeficiency.com or connect with KnowPKDeficiency on Facebook: bit.ly/KnowPKD and Instagram shorturl.at/gmFT4.   Join an inclusive community and build connections with other hemolytic anemia allies by following @AllyVoicesRising on Instagram.   TRANSPARENCY STATEMENT  Just Listen: Voices of PK Deficiency and KnowPKDeficiency.com are made possible by Agios Pharmaceuticals Inc. Visit Agios.com to learn more. The following Agios-supported programs are intended for informational and educational purposes only and are not intended as medical advice. Please speak with your healthcare professional before making any treatment decisions. Guests Tamara Schryver and Alejandra Watson have been compensated for their time.   

Jennifer Finkelstein is not here for your pity, your pinkwashed slogans, or your performative awareness campaigns. She's a 20-year young adult breast cancer survivor who turned trauma into a blueprint for action and built 5 Under 40, a no-BS nonprofit supporting women diagnosed with breast cancer under 40.In this episode, we go full Gen X therapy session—from SNL nostalgia and cold caps to the absurdity of finding out you have cancer while looking for the remote. Jen drops real talk about founding a nonprofit when nothing existed for her age group, why mental health support isn't optional, and how passing down designer scarves can mean arming someone for battle.If you're looking for honesty, grit, and a few inappropriate jokes about gastroenterology, this one's for you. You'll laugh, you might cry, and you'll definitely leave knowing why Jennifer Finkelstein is a survivor, a fighter, and a damn legend.RELATED LINKS5 Under 40 FoundationJennifer Finkelstein on LinkedInAbout 5 Under 40: Board of DirectorsDan's Papers: 5 Under 40 Supports Young Breast Cancer SurvivorsFEEDBACKLike this episode? Rate and review Out of Patients on your favorite podcast platform. For guest suggestions or sponsorship inquiries, email podcast@matthewzachary.com.Let me know if you want shorter pull quotes, audiogram text, or promotional copy for LinkedIn, Instagram, or your newsletter.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

146 Navigating the End of Life: Insights from Hospice Nurses - Part 2 with Meg Johnson Hall MS, RN, NEA-BC   In episode 146 of Hospice Explained, host Marie Betcher RN interviews Meg Johnson Hall, a nurse with over 40 years of experience. In this second part of their conversation, Meg shares her profound personal and professional experiences in hospice care, including lessons in being a strong patient advocate and handling the emotional and psychological complexities of patients nearing the end of life. The episode also delves into heartwarming stories that illuminate the deep connections formed with patients and families during their most vulnerable times. Additionally, Meg offers valuable advice for hospice professionals and families, highlighting the importance of listening to patients' needs and advocating for their quality of life. The discussion concludes with Meg sharing details about her current work in healthcare coaching and holistic healing.  00:00 Introduction and Disclaimer 00:29 Meet Your Host: Marie Betcher 00:46 Interview with Meg Johnson Hall: Part Two 01:08 Meg's Early Experience with Death 02:22 Advice for Hospice Nurses 04:30 Patient Advocacy and Family Dynamics 06:44 Humorous and Heartwarming Stories 12:35 A Patient's Final Wish 18:21 Meg's Current Work and Future Plans 21:35 Conclusion and Call to Action Reach out to MEG: https://firstqualityconsulting.com/   Hospice Explained Affiliates & Contact Information Buying from these Affilite links will help support this Podcast.  Maire introduces a partnership with Suzanne Mayer RN inventor of the  cloud9caresystem.com,  When patients remain in the same position for extended periods, they are at high risk of developing pressure injuries, commonly known as bedsores. One of the biggest challenges caregivers face is the tendency for pillows and repositioning inserts to easily dislodge during care.(Suzanne is a former guest on Episode #119) When you order with Cloud 9 care system, please tell them you heard about them from Hospice Explained.(Thank You)  If you would, you can donate to help support Hospice Explained at the Buy me a Coffee link  https://www.buymeacoffee.com/Hospice Marie's Contact Marie@HospiceExplained.com www.HospiceExplained.com Finding a Hospice Agency 1. You can use Medicare.gov to help find a hospice agency, 2. choose Find provider 3. Choose Hospice 4. then add your zip code This should be a list of Hospice Agencies local to you or your loved one.    

Katie and Allie's story began in childhood with unexplained clumsiness and subtle symptoms that intensified over time. After years of searching for answers, Katie was diagnosed with late-onset Tay-Sachs (LOTS), a rare neurodegenerative disease. Further testing confirmed her twin sister Allie's diagnosis as well. Despite facing daily challenges ranging from mobility issues to emotional strain, the sisters have become passionate advocates, raising over $1 million for research and awareness. With humor, grit, and the support of their family—especially their powerhouse mom—they continue to live fully and inspire the rare disease community. In this moving episode of On Rare, David Rintell, Head of Patient Advocacy at BridgeBio, and Mandy Rohrig, Senior Director of Patient Advocacy at BridgeBio Gene Therapy, speak with Katie and Allie, who share their experience with late-onset Tay-Sachs. The episode explores how Tay-Sachs, typically diagnosed in childhood, can present in adulthood, the emotional toll of navigating a progressive rare disease, and the resilience of a close-knit sibling duo who've turned advocacy into action.   Diana Jussila, Director of Family Services at the National Tay-Sachs & Allied Diseases Association (NTSAD), provides essential insights into late-onset Tay-Sachs disease, a rare, progressive, neurodegenerative condition caused by mutations in the HEXA gene leading to deficiency of the Hex A enzyme. Without this enzyme, toxic substances accumulate in the brain and spinal cord, resulting in symptoms like muscle weakness, balance issues, speech difficulties, and psychiatric challenges. With no approved treatments and only supportive care available, community connection, advocacy, and ongoing research are vital lifelines for those living with late-onset Tay-Sachs disease.

What happens when a black belt, sword-slinging fitness icon gets cancer—twice? She picks up a camera and dares the universe to test her again.Ilaria Montagnani is not your average anything. She's been building strong bodies (and stronger minds) for over 30 years as the founder of Powerstrike. She's part Jane Fonda, part Uma Thurman, and very much the action hero you wish was your personal trainer.In this episode, we talk about what happens when everything you built your life on—movement, strength, purpose—gets sideswiped by disease. Twice. Ilaria opens up about diagnosis shock, bad doctor vibes, wielding swords post-mastectomy, and why working out through treatment is the best revenge.We get into scanxiety, menopause side effects, nutrition spirals, and the moment she realized the fitness industry needed more truth—and less bullshit.This one's real, raw, and will either guilt you into planking or inspire you to finally cancel that gym membership you've never used. Either way, you're gonna feel something.RELATED LINKSStronger for Life documentaryPowerstrike official siteIlaria on InstagramIlaria on LinkedInWorkout programs and DVDsForza Sword Workout on AmazonFEEDBACKLike this episode? Rate and review Out of Patients on your favorite podcast platform. For guest suggestions or sponsorship inquiries, email podcast@matthewzachary.comSee Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

The Radically Genuine podcast welcomes back renowned Maternal-Fetal Medicine (MFM) physician Dr. Adam Urato as he pulls back the curtain on what pregnant women aren't being told about medication risks. Why are doctors spending less than ten minutes on "informed consent" when your child's future is at stake? What caused one medical intervention to be injected into 350,000 pregnant women despite not actually working? Dr. Urato reveals why corporate medicine makes it nearly impossible for physicians to tell patients the truth and explains his bold mission to change FDA labeling. This conversation will force you to question everything you thought you knew about "safe" medications during pregnancy.Chapters00:00 The Vulnerability of Unborn Children02:30 Introduction of Dr. Adam Urato04:08 The Case of McKenna: A Systemic Failure11:17 The Need for Rigorous Safety Evaluations16:33 Chronic Disease Epidemic and Chemical Exposures23:16 Mental Health and Pregnancy: A Complex Debate39:14 Fear Provocation and Informed Consent43:20 Informed Consent and Patient Empowerment46:36 The Challenges of Time in Medical Practice53:09 Risks and Benefits of Psychiatric Medications01:01:05 The Role of Physicians in Patient Advocacy01:06:04 Citizen's Petition and FDA Labeling Changes01:18:00 The Importance of Open Dialogue in Medicine RADICALLY GENUINE PODCASTDr. Roger McFillin / Radically Genuine WebsiteYouTube @RadicallyGenuineDr. Roger McFillin (@DrMcFillin) / XSubstack | Radically Genuine | Dr. Roger McFillinInstagram @radicallygenuineContact Radically GenuineConscious Clinician CollectivePLEASE SUPPORT OUR PARTNERS15% Off Pure Spectrum CBD (Code: RadicallyGenuine)10% off Lovetuner click here—-----------FREE DOWNLOAD! DISTRESS TOLERANCE SKILLS

Helene M. Epstein is not here to make friends with the healthcare system. She's here to dismantle the bullshit, one catastrophic medical error at a time. A marketing agency veteran turned patient safety firebrand, Helene's journey from copywriter to cancer misdiagnosis survivor, to “badass queen of patient safety,” is one hell of a ride.We talk about how her son was misdiagnosed over 15 times (yes, really), why some doctors should come with warning labels, and how American healthcare gaslights patients like it's a competitive sport. She also explains why she's giving away her new book for free, one chapter at a time, and how AI might actually be useful—if it stops hallucinating citations.This is not a light listen. It's the real deal. You'll walk away angry, inspired, and a lot more dangerous as a patient.RELATED LINKSHelene's Substack: https://helenemepstein.substack.comPatient Safety Resources: https://www.pfps.usSociety to Improve Diagnosis in Medicine: https://psnet.ahrq.gov/issue/society-improve-diagnosis-medicineHelene's Website: https://www.hmepstein.com/meet-heleneLinkedIn: https://www.linkedin.com/in/hmepsteinFEEDBACKLike this episode? Rate and review Out of Patients on your favorite podcast platform.For guest suggestions or sponsorship inquiries, email podcast@matthewzachary.comSee Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

In this episode of Nurse Converse, Shenell Thompkins is joined by Tiffany Cannon, who shares her powerful story of living with a Left Ventricular Assist Device (LVAD). At just 28, Tiffany experienced heart failure during pregnancy, leading to an emergency C-section and the life-changing decision to receive an LVAD. She opens up about the emotional toll, her return to nursing, and how her dual perspective as both a patient and nurse fuels her passion for advocacy, empathy, and patient empowerment. Tiffany's journey is one of resilience and hope, proving that heart disease is not the end—but a new beginning. >>One Nurse's Journey with LVAD (Left Ventricular Assistive Device)Jump Ahead to Listen: [02:17] Tiffany's journey to heart failure.[05:53] Heart failure diagnosis after childbirth.[09:23] Divine intervention in medical decisions.[13:25] Gratitude through life changes.[21:00] Bridging patient-nurse connection.[22:49] Advocacy and patient awareness.[26:18] Heart disease is not a death sentence.[29:09] Supporting nurses in their careers.Connect with Shenell on social media:Instagram: allonenurse_shenell  TikTok: all_one_nurseFor more information, full transcript and videos visit Nurse.org/podcastJoin our newsletter at nurse.org/joinInstagram: @nurse_orgTikTok: @nurse.orgFacebook: @nurse.orgYouTube: Nurse.org

This weekend's Newsmaker, Fatty Liver Alliance Founder Mike Betel, joins Roger Green to discuss the wide range of conferences where he has been invited to speak or sit on a panel this year. Specifically, he shares his belief on what this says about interest in MASLD and describes the messages he delivers at the conferences he attends. The interview starts with Roger asking about the benefits societies and the broader community get from having Mike at these programs. As he puts it, "I feel quite fortunate that I get to be, as you've shared before, the one sitting in the front row center, paying very close attention to every word that the speakers are saying so that I can share it back as it's happening." The posts he sends back from these meetings are well-received, with many reaching a 30% engagement rate and some exceeding 50%. He has been struck by the breadth of the organizations seeking to learn more about the liver and MASLD. The conference that struck him most in the last six months was the American Diabetes Association meeting, where only two MASLD KOLs spoke. Still, there was tremendous interest in MASLD throughout the conference. His key takeaway from the new conferences he attends, many of which are about diabetes or obesity, is how important it is for physicians to be sensitive in the language they use and, generally, the level of interest/empathy they show their patients. He believes this will be particularly important for front-line treaters, many of whom must fit this new, more open approach into an 8-minute visit.Mike's most important message is about "tailored therapy," therapeutic approaches sensitive not only to the patient's disease but also their life circumstances. An example he gives: taking 10,000 steps per day may not be feasible for a person living with obesity who is starting therapy, so why make that number the goal?Mike's final message to patients is to ask lots of questions, particularly about the comorbidities or test results that might suggest potential for future problems. 

00:00:00 - Surf's Up: Season 6 Episode 4 Surfing the MASH Tsunami concludes its coverage of the AASLD Emerging Trends Conference on MASLD, MetALD and ALD. This week, the panelists focus on pivotal messages that attendees took away from the conference and what messages they would like to share with listeners. Our newsmaker, Fatty Liver Alliance and CEO Mike Betel, discusses the lessons he has taken from being invited to a far wider swath of conferences this year and shares the messages he delivers to these new audiences. Finally, our expert, hepatology research and key opinion leader Mazen Noureddin, discusses recent advances in drug development, focusing on agents in Phase 3 trials.00:04:24 - IntroductionHost Roger Green briefly describes this episode's three sections and one key lesson from each.00:06:03 - Roundtable: Highlights from the AASLD Emerging Trends Conference, Part 4This is the concluding portion of our Emerging Trends Conference Roundtable. The group focuses on key lessons they have learned and messages they would like listeners to take from this conversation.  The pivotal idea is that SLD is a spectrum running from MASLD through MetALD to ALD. Researchers and treaters will all do best in developing and implementing therapies and guidelines with this thought in mind. Aleksander Krag stresses this idea and notes that, with several different classes of drugs demonstrating positive impact, it will be an exciting decade ahead as we learn how to apply these drugs along the spectrum. Jenn Jones and Alex Lalos note the importance of identifying MetALD, although Jenn noted that it does not seem wise to conduct trials solely with MetALD patients at this time.  00:22:04 - Newsmaker: Mike Betel on the Increased Visibility of Patient AdvocatesThis week's newsmaker, Mike Betel, has experienced a significant increase in the number of conferences at which he is invited to speak or appear on a panel. This discussion centers around the reasons Mike believes this is happening and the message(s) he delivers. To Mike, his most important contribution lies in the amount of information he sends back from each event, many of which surpass 30% download rates (and some even hit 50%). He discusses his value in diabetes, endocrinology and obesity meetings, where he brings a "liver" perspective and co-education opportunity to these events. The entire experience has taught him about the need not to stigmatize patients and reinforced his belief in the importance of tailoring care to patients' needs and personalities. 00:49:28 - Expert: Mazen Noureddin on the Exciting MASLD Drug Development EnvironmentHepatologist and Key Opinion Leader Mazen Noureddin joins Roger to discuss major advances in drug development over the past year. He covers a range of different drug classes, focusing on stages of development and the range of options within each class. Specifically, he discusses the FGF-21 agents, the range of patients for whom they might be appropriate, how efruxifermin's 96-week results may make the idea of "induction therapy" less appropriate,  and the exciting early data on cirrhosis patients. He provides some detail on the various incretin agonist options, why hepatologists are particularly excited about combinations that include a glucagon agent, and what kinds of results we might expect in upcoming trials. He goes on to discuss the pan-PPAR lanifibranor, the FASN inhibitor denifenstat, and notes ongoing work on new classes and combination therapies. In general, he paints, I think, not a rosy, but an extremely optimistic picture of what the future will be for patients who need to be treated for fatty liver. 01:09:38 - Business Report Roger discusses the next Roundtable and provides some details on SurfingMASH's coverage of the upcoming EASL Congress.

How far would you go to ensure your loved one had the best medical care possible? Ellen Elam drove her sister Cindy across Texas, headed west to New Mexico, up north to Oklahoma, and eastward to Florida. It started when she was unhappy with the care Cindy received in Dallas. What happened afterward involved a metastatic breast cancer diagnosis in Houston, and a fight for her sister’s life. During this conversation, Ellen shares her family’s story. And you’ll also hear why Ellen's dream is that everyone facing any kind of disease has a patient navigator, someone to stand beside them, support them, and get them through by doing whatever is needed, whenever it's needed, and however it's needed. Key Questions Answered 1. Why is patient navigation crucial in helping individuals navigate the complex healthcare system? 2. How can advocacy and support from caregivers and loved ones play a significant role in a patient's journey? 3. Why is asking questions, seeking help, and not being afraid to challenge doctors and explore different options essential in finding the best care? 4. How are funding and support for nonprofits necessary to provide resources and assistance to patients in need? Timestamped Overview 00:00 Introduction and Importance of Patient Navigation 01:12 Ellen's Background in Small Business 06:23 Ellen's Sister's Breast Cancer Diagnosis 09:45 Ellen's Advocacy for Her Sister 12:34 The Importance of Asking Questions and Seeking Help 18:42 The Role of Support Systems in Patient Advocacy 21:49 Ellen's Dream of Expanding Patient Navigation 27:48 Ellen's Vision with Unlimited Resources 30:39 The Need for Funding and Support for Nonprofits 32:06 Advice for Caregivers Support The Rose HERE. Subscribe to Let’s Talk About Your Breasts on Apple Podcasts, Spotify, iHeart, and wherever you get your podcasts.See omnystudio.com/listener for privacy information.

In this episode of The Patient From Hell, host Samira Daswani speaks with oncology nurse Joshua Carter about his path into cancer care, shaped by personal experiences with family illness. They explore the differences between palliative and hospice care, the complexities of pain management, and the vital role nurses play as advocates. Josh also discusses misconceptions around pain medication, the promise and challenges of e-health tools, and the often-invisible workflows nurses navigate daily. He shares practical advice for patients, caregivers, and fellow clinicians, emphasizing the importance of early palliative care and being a bold advocate within the healthcare system.About Our GuestJosh Carter is an Oncology Nurse at Stanford Women's Cancer Center. His entire 17-year nursing career has been in oncology, with inpatient, industry, and outpatient experiences in Cleveland, Chicago, San Diego, and San Francisco. Josh holds undergraduate degrees from Kent State University and Ohio University and is currently on track to complete his Master's at the University of Michigan School of Nursing this Fall. He is a certified Oncology and Breast Care Nurse. His interests include Nursing Innovation, Digital Health, Patient Advocacy, Patient Education, Patient-Centered Design, Healthcare Improvement, Quality, and Implementation Science. With his interests in Healthcare Quality, Josh is currently a Site Assessor for the Michigan Oncology Quality Consortium. Josh has spoken at the National Oncology Nursing Society Congress and Authored Chapters of Oncology Nursing Society Text Books. Josh has been involved with research for caregivers of Cancer patients and has helped in the launch of newly approved cancer treatments. Josh has experience working on a cancer care delivery team at ASCO and has been awarded the DAISY Award for Extraordinary Nurses. Resources & Links:This episode was supported by the Patient Centered Outcomes Research Institute (PCORI) and features the PCORI study “A Stepped-Wedge Randomized Controlled Trial: Effects of eHealth Interventions for Pain Control Among Adults With Cancer in Hospice”Sections00:00 - Journey into Oncology Nursing03:22 - Understanding Palliative vs. Hospice Care07:04 - Pain Management in Cancer Care10:23 - Pain Management Strategies and Misconceptions20:32 - E-Health Interventions in Pain Management23:19 - The Complex Workflow of Oncology Nursing27:48 - Quick Tips for Patients and CaregiversConnect with Us:Enjoyed this episode? Make sure to subscribe, rate, and review! Follow us on instagram, facebook, or linkedin @mantacares and visit our website at mantacares.com for more episodes and updates.Listen Across Platform:Website: https://mantacares.com/pages/podcast?srsltid=AfmBOopEP5GJ-Wd2nL-HYAInrwerIVhyJw67salKT-r9Qb_gadBvbHie YouTube: https://www.youtube.com/@mantacares Spotify:  https://open.spotify.com/show/6gM1GxDBUgXrHwlO0Zvnzs?si=9edb8680461d4eaa Apple: https://podcasts.apple.com/us/podcast/patient-from-hell/id1622669098 Disclaimer:All content and information provided in connection with Manta Cares is solely intended for informational and educational purposes only. This content and information is not intended to be a substitute for medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.This episode was supported by an award from the Patient-Centered Outcomes Research Institute.

Jonathan and Jennifer Wall didn't choose this path, but they're walking it with purpose. After losing their son, Zach, they turned their grief into action, founding Zach's Bridge, a lifeline for families navigating pediatric cancer. This episode isn't about platitudes or silver linings—it's about the raw, unfiltered reality of love and loss, the relentless unfairness of childhood cancer, and how the Walls are refusing to let their son's memory fade into the void.Jon and Jenn open up about what Zach taught them, how they've reshaped their lives in his honor, and why “Be Like Zach” isn't just a phrase—it's a call to action. We talk about the power of community, the frustrating gaps in pediatric cancer care, and how they're making sure no other family has to walk this road alone. If you've ever wondered what real resilience looks like, this is it.RELATED LINKS:Zach's BridgeZach's Rules for LifeBe Like Zach - SubstackJonathan Wall on LinkedInJon's Post: What Cancer Taught Me About WorkRett's Roost Blog - Jonathan's WritingZach's Story - OSIFEEDBACK:Like this episode? Rate and review Out of Patients on your favorite podcast platform. For guest suggestions or sponsorship inquiries, email podcast@matthewzachary.com.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

How did your last patient-physician interaction go? Did you wish that the other person had understood your perspective better? In this episode of Backtable Industry, hosts Dr. Ruchika Talwar and Anish Parikh discuss the complexities of medicine, focusing on the importance of communication between doctors and patients. --- SYNPOSIS The episode begins with an exploration of how medical and surgical training influence physician behaviors and the impact of new economic pressures on modern physicians, including the increasing need to see more patients in less time. The conversation also delves into the national sentiment of declining trust towards doctors, highlighting the impacts of disjointed care and the rise of patients turning to the internet for medical advice. The hosts emphasize the need for transparency, shared decision-making, and the benefits of using reliable information sources. --- TIMESTAMPS 00:00 - Introduction 04:42 - Declining Trust in Physicians 11:21 - The Doctor-Patient Relationship 15:09 - Taking Charge of Your Health 25:00 - The Role of Patient Advocacy and Education 28:55 - Shared Decision-Making 38:39 - Adapting to Better Informed Patients --- RESOURCES Wall St Journal Article- “Why We Don't Trust Doctors Like We Used To”: https://www.wsj.com/health/wellness/why-we-dont-trust-doctors-like-we-used-to-79784b56?mod=googlenewsfeed&st=xP8KUR “Outlive” by Dr. Peter Attia: https://peterattiamd.com/outlive/

This week's Expert is Jeff McIntyre, Vice President, Liver Programs at the Global Liver Institute. His major topic is how recent high-level FDA job cuts might affect MASH drug and diagnostics development. He also shares reactions to FibroSIGHT, HistoIndex's new digital pathology service for clinical practice. Highlight: Recent job cuts at the FDA will produce chaos in government and slow response to any emerging crises.Second Highlight: Patient self-advocacy becomes even more important in this environment.The conversation takes place on April 1, which lends context to Jeff's opening comment about the rate and nature of change in Washington, DC. He and Roger quickly focus on high-level job cuts at the FDA. Jeff believes that the clearest outcome from these changes is that the government will be less able to respond promptly and in a medically appropriate manner to future health crises. Jeff agrees with former FDA Commissioner Rob Califf's comment that the FDA as we know it "is dead," and that we have little idea what the future holds. A slower-moving, more chaotic government with a Secretary of HHS who minimizes pharmacotherapies for alternative therapies presents a challenge for all SLD patients. Jeff states that patients need to become more vigilant self-advocates (even more than they are today). He also identifies patient advocacy organizations like GLI as a place patients can go to seek the guidance and support they need from patient advocates. Finally, the conversation turns to discuss FibroSIGHT. Jeff describes FibroSIGHT as "exactly where we should be and should not be at the same time," a technology that takes a significant step forward in understanding and patient support, but one that ties us to biopsy as a standard for clinical care. Jeff and Roger agree this issue will play out over the coming years. 

A conversation with Rosie BartelNurturing the patient-physician partnership is the only way to heal healthcare.Sharing her lived experience with openness and honesty is Rosie Bartel, a patient advocate and survivor of preventable medical error. Since contracting MRSA after a routine knee replacement surgery, Rosie has channelled a hugely difficult and prolonged healthcare experience into a mission for systemic change.As she states, patient safety is a bipartisan issue, and we must ensure continued collaboration and communication between physicians, policymakers, executives and most importantly, patients themselves.——We spoke about Rosie's journey, why she believes patient advocacy is so important, the importance of breaking down silos that prevent communication, how patients can become their own advocates, and her solutions for developing relationships in healthcare that are rooted in trust.Follow me on Instagram and Facebook @ericfethkemd and checkout my website at www.EricFethkeMD.com. My brand new book, The Privilege of Caring, is out now on Amazon! https://www.amazon.com/dp/B0CP6H6QN4

Navigating the healthcare system as a woman, especially as a Black woman, can feel like a battle. A battle to be heard, believed, and treated with the care and respect we deserve. In this affirming and eye-opening episode of Be Well, Sis, I'm joined by Dr. Bayo, a physician and patient advocate who's using her voice to challenge bias in medicine and close the gap on maternal health disparities and healthcare inequities.Together, we dive into what it really takes to build trust in healthcare- not just between patient and provider, but within ourselves as we learn to speak up, ask questions, and challenge the harmful systems we've been taught to accept.Dr. Bayo shares her own journey into medicine and advocacy, including the influence of family, personal experience, and generational knowledge that shaped her commitment to making healthcare safer and more human.We explore the power of self-advocacy, the necessity of community, and why curiosity is one of the most powerful tools we can bring into any medical setting. This episode is for you if:You've ever felt dismissed or gaslit in a medical settingYou're curious about how to become a stronger advocate for yourself or your familyYou're a provider seeking to understand and confront your own biasesYou believe in the power of community-based healing and generational wisdomYou're ready to reclaim agency over your body, your choices, and your careWhether you're a patient trying to make sense of conflicting medical advice, a new mom seeking support, or a provider looking to serve with more empathy and equity—this conversation is your reminder that you deserve to be seen, heard, and cared for.Mentioned in this episode:Why Black patients don't trust the healthcare system | Bayo Curry-Winchell | TEDxRenoDo No Harm | Dr. Bayo Curry-Winchell | TEDxRutgersAbout Dr. Bayo: Dr. Bayo is a physician and passionate advocate for health equity, especially within maternal health. Her work centers around patient empowerment, provider accountability, and breaking cycles of harm in medicine. She believes in treating the whole person—body, mind, and spirit—with intention, respect, and curiosity.

Sarah Armstrong—forever Sarah Oakden to me, no matter what the legal documents say—isn't just my best friend. She's my first college friend, my musical theater soulmate, and the first person who truly saw me as an artist. She was there when I walked onto Binghamton's campus, and she was there when I walked into cancer hell. And, because we're nothing if not in sync, a few decades later, she got her own cancer badge of honor, and I was right there with her every step of the way.This episode is a love letter to friendship, music, and those moments that change your life forever. We nerd out over Sondheim, Binghamton's infamous "Theater 101 with Dr. Susan Peters." and the weird and wonderful rabbit holes that turn into entire alternate realities across decades of aging gracefully and falling with style.We talk about how cancer is the worst club with the best people and how surviving it together just adds another verse to the song we've been singing for 30 years. It's funny. It's real. It's a master class in love, laughter, and musicals that should have been bigger; with a big tip of the hat to Nancy Ford and Gretchen Cryer for their acclaimed musical "I'm Getting My Act Together and Taking It on the Road"Oh, and RIP to the legendary Denny's on Vestal Parkway. You will be missed.FEEDBACK:Like this episode? Rate and review Out of Patients on your favorite podcast platform. For guest suggestions or sponsorship inquiries, email podcast@matthewzachary.com.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Physician Tina Stankovic is an ear, nose, and throat specialist and a lover of music whose seemingly disparate pursuits — medicine and music — have led her to a groundbreaking career in hearing research. She recently worked with music legend Paul Simon during his well-publicized battle with hearing loss and he has become a vocal advocate for hearing research. New understandings and new approaches like regenerative medicine have put the once-impossible dream of hearing restoration within reach, Stankovic tells host Russ Altman on this episode of Stanford Engineering's The Future of Everything podcast.Have a question for Russ? Send it our way in writing or via voice memo, and it might be featured on an upcoming episode. Please introduce yourself, let us know where you're listening from, and share your question. You can send questions to thefutureofeverything@stanford.edu.Episode Reference Links:Stanford Profile: Konstantina M. StankovicStanford Researchers Assist Paul Simon with his Return to the StageInside the Stanford Initiative to Cure Hearing Loss: Cutting-Edge Science and InnovationConnect With Us:Episode Transcripts >>> The Future of Everything WebsiteConnect with Russ >>> Threads / Bluesky / MastodonConnect with School of Engineering >>> Twitter/X / Instagram / LinkedIn / FacebookChapters:(00:00:00) IntroductionRuss Altman introduces guest Tina Stankovic, a professor of otolaryngology and neurosurgery at Stanford University.(00:03:36) Why Hearing LossWhat inspired Tina's lifelong journey into hearing science.(00:04:17) Treating Hearing LossLimits of current options and lack of FDA-approved therapies.(00:05:23) Causes of Hearing LossThe two main categories of hearing loss: conductive vs. sensorineural.(00:07:47) Inside the Inner EarThe complexity of the inner ear, and why diagnosis is so difficult.(00:09:22) Tinnitus & Hearing LossWhy ear damage can cause phantom sounds in the brain.(00:10:28) Emerging Technologies in Hearing ResearchNew technologies that are evolving treatment approaches.(00:15:19) Recreating the Ear in the LabChallenges the inner ear's unique composition pose to researchers.(00:20:02) AI Applications in Hearing DiagnosisThe ways AI is transforming diagnosis and genetic analysis.(00:21:31) Can Ears Regrow?Why humans don't regenerate ear cells—but mice might help.(00:23:55) Emotional & Social Toll of Hearing LossHow hearing loss can lead to isolation, stigma, and cognitive decline.(00:26:06) Born Deaf vs. Later Hearing LossExperiential differences between those with early and late hearing loss.(00:27:52) Paul Simon's Role and AdvocacyHow the artist got involved with Tina's work and the initiative at Stanford.(00:29:44) Protecting Your HearingBest practices for protecting your hearing.(00:33:21) Conclusion Connect With Us:Episode Transcripts >>> The Future of Everything WebsiteConnect with Russ >>> Threads / Bluesky / MastodonConnect with School of Engineering >>>Twitter/X / Instagram / LinkedIn / Facebook

Imagine having a dedicated nurse advocate by your side, ensuring you receive the best possible care wherever you call home. In this episode, Jeannemarie Bozza discusses founding Commodore Concierge Nurse Management, a unique home nursing company focused on personalized, holistic care that empowers nurses and prioritizes preventative medicine. Her passion for exceptional care led to a rapidly growing referral-based business that aims to improve patient quality of life and elevate home healthcare as an alternative to traditional settings. Tune in as Jeannie Bozza shares how her innovative approach is transforming patient care and redefining home nursing! Watch the entire episode on YouTube and get more details at Think Oral Health. Resources: Connect with and follow Jeannemarie Bozza on LinkedIn. Visit the Commodore Concierge Nurse Management website! Watch the entire episode on YouTube and get more details at Think Oral Health. Mariya Filipova - https://filipova.health/ Systemic Health Investor - https://www.4100dx.com/ Care Convergence Thought Leader: Dental Economics Forbes Technology Council Member Jonathan Levine - www.drjonathanlevine.com Founder - JBL New York City www.jblnyc.com Founder - GLO Science LLC www.gloscience.com Co-Founder - GLO GOOD Foundation www.glogoodfoundation.org

Dr. Hoffman continues his conversation with Dr. Julie Siemers, a nurse educator and author of “Surviving Your Hospital Stay: A Nurse Educator's Guide to Staying Safe and Living to Tell About It.” 

Dr. Julie Siemers, a nurse educator and author of “Surviving Your Hospital Stay: A Nurse Educator's Guide to Staying Safe and Living to Tell About It,” details the importance of patient safety in hospitals, the dangers of medical errors, and how patients and their families can advocate for better care. Dr. Siemers talks about the critical role of nurses, the hierarchy within the nursing profession, and the importance of effective communication between healthcare providers and patients. She also offers practical advice on dealing with high-risk medications, leveraging AI in healthcare, and ensuring better health outcomes by being informed and proactive.

Food for Thought: Cancer, Calories, and Kicking AssVanessa Rissetto is back, and she's bringing the same energy, wit, and unapologetic realness that made her a fan favorite. Last time, we talked nutrition and the rise of Culina Health. This time, life threw her a plot twist—breast cancer. Because, you know, irony.Vanessa was busy building a nutrition empire when she got diagnosed. So, naturally, she texted, “WTF do I do now?” to her closest cancer Sherpas—yours truly included. Spoiler alert: She powered through, beat cancer, and kept scaling Culina Health to new heights.We get into it all—being a cancer patient when you're supposed to be the health expert, the emotional whiplash of survivorship, the absolute clown show that is American food regulation, and why European Oreos are apparently less cancerous than ours. Also, parenting, loneliness, and why the healthcare system still makes zero sense.Get ready for a wild ride of truth bombs, wisdom, and laughter with one of the sharpest voices in nutrition and entrepreneurship.RELATED LINKSVanessa on LinkedInCulina HealthVanessa's WebsiteVanessa's Story on HLTHVanessa on Breast Cancer - TODAYWhat Vanessa Learned About Food After CancerDaily Mail: Vanessa on an Unexpected SymptomSurvivorNet: Vanessa on Nutrition and CancerFEEDBACKLike this episode? Rate and review Out of Patients on your favorite podcast platform. For guest suggestions or sponsorship inquiries, email podcast@matthewzachary.com.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Philip's journey with ATTR began with unexplained weight loss and gastrointestinal issues that puzzled doctors for years. Despite seeing multiple specialists, his condition remained undiagnosed until a physician at Johns Hopkins finally connected the dots, confirming ATTR. By then, Philip had lost 60 pounds and was on the brink of survival. In today's episode of On Rare, David Rintell, Head of Patient Advocacy at BridgeBio, and Mandy Rohrig, Senior Director of Patient Advocacy at BridgeBio Gene Therapy, speak with Philip and his wife, Sally, who has helped to navigate the frustrating medical system, advocate for answers, and ultimately helped Philip receive life-saving IV nutrition. After years of uncertainty, Philip finally found an expert team with the knowledge, treatment, and community they needed. Philip and Sally share their story of perseverance, partnership, and hope for a brighter future. Dr. Adam Castaño, head of the Amyloid Prevention Program at BridgeBio, provides a medical overview of TTR amyloidosis (ATTR), a rare, progressive disease caused by misfolded transthyretin (TTR) proteins that form amyloid deposits in different parts of the body such as the heart, the peripheral nervous system, and the gastrointestinal tract. These deposits lead to debilitating symptoms including heart failure, neuropathy, and digestive issues, often mimicking common age-related conditions and possibly contributing to underdiagnosis. ATTR can be hereditary, but it also develops in the general population (this is called wild type). Advancements in non-invasive imaging and specialized protein staining have improved early detection, offering hope for better disease management.

Ever feel lost in the maze of healthcare? As part of Podcasthon, Talaya Dendy sits down with Sandra Washington in this powerful and special episode. Sandra is the driving force behind C.H.L.M.S. Medi-Helpz, and she shares her incredible journey as a patient, revealing the raw, personal inspiration that sparked her mission to bridge the healthcare gap for underserved communities. Discover how C.H.L.M.S. Medi-Helpz is transforming lives through patient advocacy and vital healthcare literacy resources. Don't just navigate healthcare; conquer it with the tools and insights you'll gain in this must-listen episode.

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EPISODE DESCRIPTIONLillian Kreppel doesn't hold back. A seven-year anal cancer survivor and co-founder of the HPV Cancers Alliance, she has made it her mission to challenge stigma, fight misinformation, and push for better awareness of HPV-related cancers. In this episode, she sits down with Matthew Zachary to talk about her journey from high-powered sales to full-time advocacy, the absurd misconceptions surrounding HPV, and why more doctors should be doing rectal exams—but aren't. With her signature humor and relentless drive, Lillian shares how she turned her diagnosis into a movement, what it takes to make people uncomfortable for the right reasons, and why she refuses to stop talking about the HPV vaccine. It's an eye-opening, unfiltered, and surprisingly hilarious conversation about a serious issue too many people ignore.RELATED LINKSHPV Cancers Alliance: https://hpvca.org/Lillian's Story (MSKCC): https://www.mskcc.org/experience/hear-from-patients/lillianInterview on HPVWorld: https://www.hpvworld.com/articles/anal-cancer-and-hpv-a-history-of-awareness-and-stigma-interview-with-lillian-kreppel/Speaking With Lillian Kreppel (Ask About HPV): https://www.askabouthpv.org/stories/speaking-with-lillian-kreppel-co-founder-of-the-hpv-cancers-allianceEuropean Cancer Organization Feature: https://www.europeancancer.org/content/lillian-kreppel.htmlAnal Cancer Survivor Feature (Patient Resource):https://www.patientresource.com/Anal_Cancer_Survivor_Lillian_KreppelFEEDBACKLike this episode? Rate and review Out of Patients on your favorite podcast platform. For guest suggestions or sponsorship inquiries, email podcast@matthewzachary.com.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

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Grace Charrier—a powerhouse advocate, author, and cancer survivor—whose journey from a Stage 3 triple-negative breast cancer diagnosis to global advocacy is nothing short of extraordinary. Originally from Nigeria, Grace's life was upended when she was diagnosed following an unexpected health scare. Instead of retreating, she turned her experience into action, launching Cancer Convos with Grace B, writing the memoir IMPOSSICANT!, and becoming a voice for patients navigating the complexities of cancer care worldwide.Matthew and Grace dive into the realities of living with cancer, from the absurdities of the U.S. healthcare system to the deeply ingrained stigmas surrounding the disease in Africa. They explore the critical role of doctor empathy, the perils of consulting “Dr. Google,” and the relentless frustration of dealing with insurance providers. The conversation is raw, unfiltered, and filled with humor, as they trade stories about survivorship, advocacy, and the power of storytelling in making sense of the chaos.This episode delivers a mix of inspiration, honesty, and irreverence—showcasing Grace's unwavering determination to change the cancer narrative, one conversation at a time.RELATED LINKS:Grace Charrier on LinkedInCancer Convos with Grace B on YouTubeGrace's Memoir: IMPOSSICANT! on AmazonBlue Note TherapeuticsRare Patient VoiceImerman AngelsAmerican Cancer Society Cancer Action NetworkRed Door CommunityHealth UnionAdvocates for Collaborative EducationFEEDBACK:Like this episode? Rate and review Out of Patients on your favorite podcast platform. For guest suggestions or sponsorship inquiries, email podcast@matthewzachary.com.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

In this episode of Nurse Converse, hosts Sarah Warren and Portia Wofford-Terry explore the vital role of nurses as patient advocates, particularly in challenging situations involving law enforcement and systemic healthcare inequities. They discuss how racial disparities, systemic barriers, and recent legal changes shape patient care—and what nurses can do to navigate these challenges while upholding their ethical responsibilities.>>Opinion | Criminalizing Your Patients Is Not Part Of Your Job as a NurseJump Ahead to Listen:[01:53] Nurses and community safety.[05:22] Mental health crises in nurses.[07:36] Patient advocacy against authority.[17:08] Black maternal health crisis.[20:01] Black women's health equity issues.[23:38] Patient autonomy and systemic issues.[27:35] Healthcare worker mental health.Connect with Sarah on LinkedIn and social media:Instagram: @shesinscrubsTikTok: @sarahlizwarren Connect with Portia on social media:Instagram: @thewritenurseFor more information, full transcript and videos visit Nurse.org/podcastJoin our newsletter at nurse.org/joinInstagram: @nurse_orgTikTok: @nurse.orgFacebook: @nurse.orgYouTube: Nurse.org

In this episode of a Mortar and Pestle, Michael Strouse, firefighter for the Department of Defense, and Robyn Crow, RPh, Lead Pharmacist at Clarks RX Pharmacy, joins host Mike De Lisio and co-host Sebastian Denison, RPh, FAARM  (Candidate) to discuss how compounding saved Micheals life.

Buckle up, because Amy Gittelman is back, and this episode is one for the ages. A fellow SUNY Binghamton (yes, we still call it that) alum, Amy joins me for a hilarious and brutally honest deep dive into the absurdities of healthcare, insurance fuckery, and the general nonsense that plagues the system. From dodging medical debt landmines to battling insurance companies that seem hellbent on denying care, we go all in.But wait—there's more! We reminisce about our Binghamton days, debate the superiority of Wegmans over every downstate grocery store, and expose the dark art of healthcare billing fraud (spoiler: it's as bad as you think). Amy, a seasoned healthcare badass, drops wisdom bombs on why the industry is broken, what we can do about it, and why she's basically a mix of Miranda Priestly, Leslie Knope, and Dolly freakin' Parton.If you've ever yelled at your insurance company, fought a medical bill, or just wanted to flip a table over the state of American healthcare, this episode is for you.RELATED LINKS:Amy Gittelman on LinkedInAmy's Odyssey Feature on PM360Amy's Profile on OncoDailyVeradigm Healthcare SolutionsFEEDBACK:Like this episode? Rate and review Out of Patients on your favorite podcast platform. For guest suggestions or sponsorship inquiries, email podcast@matthewzachary.com.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

Welcome to another episode of Out of Patients, where we get real about the absolute circus that is the American healthcare system. If you've ever been trapped in a medical billing nightmare, gaslit by insurance reps, or just generally felt like healthcare is an elaborate game designed to screw you—this one's for you.Joining me is the indomitable Deb Gordon, a relentless champion for healthcare consumers, co-founder of Umbra Health Advocacy, and co-director of the Alliance of Professional Health Advocates. She literally wrote the book (The Healthcare Consumer's Manifesto) on navigating this broken system—and she's here to help you get unf*cked.We talk about why the healthcare system is a hot mess, how patient advocacy is (unfortunately) a booming business, and why you shouldn't have to fight tooth and nail just to get the care you're entitled to. And yes, there are people you can hire to help you navigate the bureaucratic hellscape of prior authorizations, medical bills, and misdiagnoses. It's an infuriating conversation—but also wildly empowering.If you've ever thought, Where the hell was this when I needed it?—well, now you know.RELATED LINKS