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Trent was a new father when his life changed overnight, losing the ability to walk, speak or even lift a phone. He spent years in a wheelchair before finding his way back through sport and self-advocacy. Join Martine as Trent shares how he went from paralysis to paratriathlete.See omnystudio.com/listener for privacy information.
EPISODE DESCRIPTIONRebecca V. Nellis never meant to run a nonprofit. She just never left. Twenty years later, she's still helming Cancer and Careers after a Craigslist maternity-leave temp job turned into a lifelong mission.In this 60-minute doubleheader, we cover everything from theater nerdom and improv rules for surviving bureaucracy, to hanging up on Jon Bon Jovi, to navigating cancer while working—or working while surviving cancer. Same thing.Rebecca's path is part Second City, part Prague hostel, part Upper East Side grant writer, and somehow all of that makes perfect sense. She breaks down how theater kids become nonprofit lifers, how “sample sale feminism” helped shape a cancer rights org, and how you know when the work is finally worth staying for.Also: Cleavon Little. Tap Dance Kid. 42 countries. And one extremely awkward moment involving a room full of women's handbags and one very confused Matthew.If you've ever had to hide your diagnosis to keep a job—or wanted to burn the whole HR system down—this one's for you.RELATED LINKSCancer and CareersRebecca Nellis on LinkedIn2024 Cancer and Careers Research ReportWorking with Cancer Pledge (Publicis)CEW FoundationI'm Not Rappaport – Broadway InfoFEEDBACKLike this episode? Rate and review Out of Patients on your favorite podcast platform. For guest suggestions or sponsorship opportunities, 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.
Did you know that blocked fallopian tubes can be UNBLOCKED? Very often, women who discover blocked fallopian tubes during an HSG hear that their only option is to go on to IVF, but that's not the only path forward. There are actually ways to restore the healthy function of blocked tubes through a very simple procedure. Dr. Naomi Whittaker joins us today to talk about this easy approach and give you helpful information as you advocate for your own care! In this episode, she discusses:· The limited amount of information available as to why tubes get blocked and how prevalent the problem is· pain prevention and management for HSG· the procedure that is MORE helpful than a standard HSG· why this procedure is so effective· how you can talk with your doctor about it and who is trained in this procedureNOTE: This episode does discuss briefly trauma of medical procedures, but should be appropriate for most audiences.GUEST BIO: Dr. Whittaker is a Pennsylvania-based board certified OBGYN and fellowship-trained surgeon who specializes in the Creighton model system and NaPro technology, which works cooperatively with a woman's body to treat the underlying cause of gynecologic issues and infertility, such as endometriosis and PCOS. She created the Restorative Reproductive Medicine Academy and has dedicated her practice to women's restorative reproductive medicine, compassionate healthcare, and education.HELPFUL LINKS:RRM Academy @napro_fertility_surgeon on InstagramEp. 97: Ovarian Cysts, with Dr. Naomi Whittaker, MD, CFCMCEp. 139: Preventing scarring, adhesions, and repeat endometriosis surgery, with Dr. Naomi WhittakerSend us a textSupport the showOther great ways to connect with Woven Natural Fertility Care: Learn the Creighton Model System with us! Register here! Get our monthly newsletter: Get the updates! Chat about issues of fertility + faith: Substack Follow us on Instagram: @wovenfertility Watch our episodes on YouTube: @wovenfertility Love the content? The biggest gift you could give is to click a 5 star review and write why it was so meaningful! This podcast is provided for educational and informational purposes only and does not constitute providing medical advice or professional services. The information provided should not be used for diagnosing or treating a health problem or disease, and those seeking personal medical advice should consult with a licensed physician. Always seek the advice of your doctor or other qualified health provider regarding a medical condition. If you think you may have a medical emergency, call 911 or go to the nearest emergency room immediately. Neither Woven nor its staff, nor any contributor to this podcast, makes any represe...
Frightening statistics show that one in four older patients experience harm in hospitals, often from preventable medication errors, infections, or misdiagnoses. Your life, or the life of a loved one, can depend on knowing how to advocate for proper care when the system fails. In this episode, I speak with Dr. Julie Siemers, a nurse educator with 40 years of experience, about navigating the complex and sometimes hazardous hospital environment. She reveals the top causes of patient harm and gives practical, life-saving strategies to ensure you or your family members receive the safe, effective care you deserve. We discuss the simple questions you should ask about medications, how to insist on basic safety protocols, and what to do when you feel pressured or ignored by medical staff. " The hospital really is the last place you wanna be." ~ Julie Siemers In This Episode: - Julie's nursing background - Top causes of death in hospitals - How to prevent dangerous medication errors - Preventing hospital-acquired infections - How to avoid diagnostic errors and medical coercion - How to choose the safest hospital - Tools for effective advocacy - Real stories of surgical mistakes - Concerns over new nurse competency - The financial cost of patient harm Products & Resources Mentioned: Puori PW1 Whey Protein & Creatine+: Go to https://puori.com/wendy and use code WENDY to get 20% off your entire order, even on discounted subscriptions. Qualia Senolytic: Get 15% off with code WENDY at https://qualialife.com/wendy Chef's Foundry P600 Non-Toxic Cookware: Perfect for health-conscious kitchens. Get a special discount at http://bit.ly/myersdetox Organifi Collagen: Save 20% with code MYERSDETOX at https://organifi.com/myersdetox Heavy Metals Quiz: Find out if heavy metals are impacting your energy, mood, and overall health at https://heavymetalsquiz.com About Dr. Julie Siemers: Dr. Julie Siemers, DNP, RN, brings more than four decades of nursing experience across trauma, oncology, ER, and education. Her doctoral work focused on reducing patient harm and improving hospital safety systems. Today, she advocates for patient empowerment through public speaking, writing, and teaching, helping families recognize and prevent medical errors. Learn more at https://drjuliesiemers.com/ Disclaimer The Myers Detox Podcast was created and hosted by Dr. Wendy Myers. This podcast is for information purposes only. Statements and views expressed on this podcast are not medical advice. This podcast, including Wendy Myers and the producers, disclaims responsibility for any possible adverse effects from using the information contained herein. The opinions of guests are their own, and this podcast does not endorse or accept responsibility for statements made by guests. This podcast does not make any representations or warranties about guests' qualifications or credibility. Individuals on this podcast may have a direct or indirect financial interest in products or services referred to herein. If you think you have a medical problem, consult a licensed physician.
See omnystudio.com/listener for privacy information.
Sally Wolf is back in the studio and this time we left cancer at the door. She turned 50, brought a 1993 Newsday valedictorian article as a prop, and sat down with me for a half hour of pure Gen X therapy. We dug into VHS tracking, Red Dawn paranoia, Michael J. Fox, Bette Midler, and how growing up with no helmets and playgrounds built over concrete somehow didn't kill us.We laughed about being Jewish kids in the suburbs, the crushes we had on thirty-year-olds playing teenagers, and what it means to hit 50 with your humor intact. This episode is part nostalgia trip, part roast of our own generation, and part meditation on the privilege of being alive long enough to look back at it all. If you ever watched Different Strokes “very special episodes” or had a Family Ties lunchbox, this one's for you.RELATED LINKSSally Wolf Official WebsiteSally Wolf on LinkedInSally Wolf on InstagramCosmopolitan Essay: “What It's Like to Have the ‘Good' Cancer”Oprah Daily: “Five Things I Wish Everyone Understood About My Metastatic Breast Cancer Diagnosis”Allure Breast Cancer Photo ShootTom Wilson's “Stop Asking Me the Question” SongFEEDBACKLike 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.
Many challenging medical conditions defy treatment and challenge clinicians to come up with innovative solutions—Chronic Fatigue Syndrome, fibromyalgia, Lyme Disease, Multiple Chemical Sensitivity (MCS), Ehlers-Danlos Syndrome (EDS) and autoimmune conditions; add now the growing burden of patients with Long Covid and vaccine injury. Dr. Tania Dempsey specializes in treating these complicated chronic disorders. She has embraced and advanced a new paradigm based on addressing Mast Cell Activation Syndrome (MCAS). What is MCAS? How is it differentiated from ordinary allergies, and why are its symptoms so pervasive? What are its causes and triggers? What role for low-histamine diets? Antihistamines? Other novel medications? What nutritional supplements can facilitate its resolution? How does recognition of the contribution of MCAS facilitate treatment of patients suffering from Long Covid and vaccine injuries?
Dr. Hoffman continues his conversation with Dr. Tania Dempsey.
In this episode of HIPcast, Ilene Corina shares with us the importance of being a patient advocate whether it is for yourself, a family member or a friend. Healthcare is complicated and the Pulse Center for Patient Safety Education and Advocacy has resources available for you to learn how to advocate for better healthcare. #HIPcast with Shannan and Seth.Resource links:www.pulsecenterforpatientsafety.orgwww.icorina.comwww.takecharge.carewww.gnanow.orgHIPcast brought to you by Enterprise Social Record
Send us a textIn this podcast we discuss the challenges of navigating evidence-based information in the age of AI. We explore the importance of critical thinking, the role of trust in healthcare, and the impact of misinformation. We encourage patients to advocate for themselves and to question the information they come across, especially in a time where AI can fabricate data. Takeaways-- It's challenging to differentiate between valuable information and misinformation.- AI is designed to provide information that pleases users, which can lead to inaccuracies.- Critical thinking is essential for both healthcare providers and patients.- Mistrust in the healthcare system is growing due to various factors.- Insurance companies often dictate patient care, complicating treatment options.- AI can fabricate citations, making it crucial to verify sources.- Patients should be encouraged to ask questions about their care.Chapters-00:00- Navigating Evidence in the Age of AI02:47- The Role of Trust in Healthcare05:06- The Impact of AI on Research and Writing08:17- Patient Advocacy and Self-Advocacy10:42- The Challenges of Healthcare Systems13:38- Critical Thinking in Research16:02- The Importance of Personal Stories in Healthcare18:38- Building Trust in a Distrustful Environment21:14- Final Thoughts on Navigating InformationFollow us on instagram @crohns_and_colitis_dietitiansFollow us on youtube @thecrohnscolitisdietitiansWe love helping provide quality content on IBD nutrition and making it more accessible to all through our podcast, instagram and youtube channel. Creating the resources we provide comes at a significant cost to us. We dream of a day where we can provide even more free education, guidance and support to those with IBD like us. We need your support to do this. You can help us by liking episodes, sharing them on your social media, subscribing to you tube and telling others about us (your doctors, friends, family, forums/reddit etc). Can you do this for us? In return, I promise to continually level up what we do here.
Dr. Nikki Maphis didn't just lose a grant. She lost a lifeline. An early-career Alzheimer's researcher driven by her grandmother's diagnosis, Nikki poured years into her work—only to watch it vanish when the NIH's MOSAIC program got axed overnight. Her application wasn't rejected. It was deleted. No feedback. No score. Just gone.In this episode, Oliver Bogler pulls back the curtain on what happens when politics and science collide and promising scientists get crushed in the crossfire. Nikki shares how she's fighting to stay in the field, teaching the next generation, and rewriting her grant for a world where even the word “diversity” can get you blacklisted. The conversation is raw, human, and maddening—a reminder that the real “war on science” doesn't happen in labs. It happens in inboxes.RELATED LINKS:• Dr. Nikki Maphis LinkedIn page• Dr. Nikki Maphis' page at the University of New Mexico• Vanguard News Group coverage• Nature article• PNAS: Contribution of NIH funding to new drug approvals 2010–2016FEEDBACK:Like this episode? Rate and review Out of Patients on your favorite podcast platform. For guest suggestions or sponsorship inquiries, visit outofpatients.com.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.
Carla Tardiff has spent 17 years as the CEO of Family Reach, a nonprofit that shouldn't have to exist but absolutely does—because in America, cancer comes with a price tag your insurance doesn't cover.We talk about shame, fear, burnout, Wegmans, Syracuse, celebrity telethons, and the godforsaken reality of choosing between food and treatment. Carla's a lifer in this fight, holding the line between humanity and bureaucracy, between data and decency. She's also sharp as hell, deeply funny, and more purpose-driven than half of Congress on a good day.This episode is about the work no one wants to do, the stuff no one wants to say, and why staying angry might be the only way to stay sane.Come for the laughs. Stay for the rage. And find out why Family Reach is the only adult in the room.RELATED LINKSFamily ReachFinancial Resource CenterCarla on LinkedInMorgridge Foundation ProfileAuthority Magazine InterviewSyracuse University FeatureFEEDBACKLike 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.
Dr. Hoffman continues his conversation with Dr. Rob Verkerk, Founder, Executive & Scientific Director, Alliance for Natural Health International & Alliance for Natural Health USA.
Dr. Robert Verkerk, the Executive Director of the Alliance for Natural Health (ANH), discusses a wide range of topics, including the intersection of high-tech medical advances and natural therapies. Dr. Verkerk explains the mission of ANH, emphasizing the defense of health freedom and the promotion of natural approaches to health. They delve into various initiatives that ANH is working on, such as defending access to natural thyroid, reversing bans on important supplements like NMN and NAC, and challenging FDA regulations that restrict information on the benefits of natural products. The episode also highlights the importance of maintaining a balanced approach to healthcare and the ongoing efforts to reform regulatory frameworks that favor pharmaceutical interventions over natural alternatives.
Advances in precision medicine and patient advocacy are transforming the way cancer is understood and treated. Nikoo McGoldrick shares her personal journey with metastatic breast cancer, emphasizing the importance of patients having a voice in their care. Sheldon Morris, M.D., M.P.H., explains how regenerative medicine progresses through stem cell therapies, gene therapies, CAR-T cell treatments, and small molecules, with clinical trials addressing cancer, autoimmune disorders, and neurological diseases. Sandip Patel, M.D., F.A.S.C.O., highlights cancer stem cells as key drivers of relapse and resistance, describing precision medicine approaches, novel CAR-T therapies, and the role of artificial intelligence in cancer detection and treatment. Rebecca Shatsky, M.D., focuses on breast cancer as a systemic disease linked to dormant cancer stem cells, underscoring the need for genomic and immune-based therapies, including innovative antibody treatments and targeted clinical trials. Series: "Stem Cell Channel" [Health and Medicine] [Science] [Show ID: 40910]
Advances in precision medicine and patient advocacy are transforming the way cancer is understood and treated. Nikoo McGoldrick shares her personal journey with metastatic breast cancer, emphasizing the importance of patients having a voice in their care. Sheldon Morris, M.D., M.P.H., explains how regenerative medicine progresses through stem cell therapies, gene therapies, CAR-T cell treatments, and small molecules, with clinical trials addressing cancer, autoimmune disorders, and neurological diseases. Sandip Patel, M.D., F.A.S.C.O., highlights cancer stem cells as key drivers of relapse and resistance, describing precision medicine approaches, novel CAR-T therapies, and the role of artificial intelligence in cancer detection and treatment. Rebecca Shatsky, M.D., focuses on breast cancer as a systemic disease linked to dormant cancer stem cells, underscoring the need for genomic and immune-based therapies, including innovative antibody treatments and targeted clinical trials. Series: "Stem Cell Channel" [Health and Medicine] [Science] [Show ID: 40910]
Advances in precision medicine and patient advocacy are transforming the way cancer is understood and treated. Nikoo McGoldrick shares her personal journey with metastatic breast cancer, emphasizing the importance of patients having a voice in their care. Sheldon Morris, M.D., M.P.H., explains how regenerative medicine progresses through stem cell therapies, gene therapies, CAR-T cell treatments, and small molecules, with clinical trials addressing cancer, autoimmune disorders, and neurological diseases. Sandip Patel, M.D., F.A.S.C.O., highlights cancer stem cells as key drivers of relapse and resistance, describing precision medicine approaches, novel CAR-T therapies, and the role of artificial intelligence in cancer detection and treatment. Rebecca Shatsky, M.D., focuses on breast cancer as a systemic disease linked to dormant cancer stem cells, underscoring the need for genomic and immune-based therapies, including innovative antibody treatments and targeted clinical trials. Series: "Stem Cell Channel" [Health and Medicine] [Science] [Show ID: 40910]
Advances in precision medicine and patient advocacy are transforming the way cancer is understood and treated. Nikoo McGoldrick shares her personal journey with metastatic breast cancer, emphasizing the importance of patients having a voice in their care. Sheldon Morris, M.D., M.P.H., explains how regenerative medicine progresses through stem cell therapies, gene therapies, CAR-T cell treatments, and small molecules, with clinical trials addressing cancer, autoimmune disorders, and neurological diseases. Sandip Patel, M.D., F.A.S.C.O., highlights cancer stem cells as key drivers of relapse and resistance, describing precision medicine approaches, novel CAR-T therapies, and the role of artificial intelligence in cancer detection and treatment. Rebecca Shatsky, M.D., focuses on breast cancer as a systemic disease linked to dormant cancer stem cells, underscoring the need for genomic and immune-based therapies, including innovative antibody treatments and targeted clinical trials. Series: "Stem Cell Channel" [Health and Medicine] [Science] [Show ID: 40910]
Advances in precision medicine and patient advocacy are transforming the way cancer is understood and treated. Nikoo McGoldrick shares her personal journey with metastatic breast cancer, emphasizing the importance of patients having a voice in their care. Sheldon Morris, M.D., M.P.H., explains how regenerative medicine progresses through stem cell therapies, gene therapies, CAR-T cell treatments, and small molecules, with clinical trials addressing cancer, autoimmune disorders, and neurological diseases. Sandip Patel, M.D., F.A.S.C.O., highlights cancer stem cells as key drivers of relapse and resistance, describing precision medicine approaches, novel CAR-T therapies, and the role of artificial intelligence in cancer detection and treatment. Rebecca Shatsky, M.D., focuses on breast cancer as a systemic disease linked to dormant cancer stem cells, underscoring the need for genomic and immune-based therapies, including innovative antibody treatments and targeted clinical trials. Series: "Stem Cell Channel" [Health and Medicine] [Science] [Show ID: 40910]
Advances in precision medicine and patient advocacy are transforming the way cancer is understood and treated. Nikoo McGoldrick shares her personal journey with metastatic breast cancer, emphasizing the importance of patients having a voice in their care. Sheldon Morris, M.D., M.P.H., explains how regenerative medicine progresses through stem cell therapies, gene therapies, CAR-T cell treatments, and small molecules, with clinical trials addressing cancer, autoimmune disorders, and neurological diseases. Sandip Patel, M.D., F.A.S.C.O., highlights cancer stem cells as key drivers of relapse and resistance, describing precision medicine approaches, novel CAR-T therapies, and the role of artificial intelligence in cancer detection and treatment. Rebecca Shatsky, M.D., focuses on breast cancer as a systemic disease linked to dormant cancer stem cells, underscoring the need for genomic and immune-based therapies, including innovative antibody treatments and targeted clinical trials. Series: "Stem Cell Channel" [Health and Medicine] [Science] [Show ID: 40910]
In the inaugural episode of On Rare: Innovators, a new sister series of On Rare from BridgeBio, hosts David Rintell, Head of Patient Advocacy at BridgeBio, and Mandy Rohrig, Senior Director of Patient Advocacy at BridgeBio, introduce listeners to the changemakers reshaping the rare disease community through advocacy, compassion, and action. The series begins in Gijón, Spain with Carmen Alonso, founder and longtime leader of the ALPE Foundation, who has dedicated her life to improving care and building community for people and families living with achondroplasia. What began as Carmen's personal journey as a mother seeking information and support grew into an international network that has transformed how achondroplasia and other skeletal dysplasia are understood and managed. Joined by her son Yago and longtime colleague Fani , Carmen reflects on the lessons of love and inclusion that have guided her work and the belief that “you can always do something.” Through Carmen's story, On Rare: Innovators celebrates leaders whose ideas and determination drive change across science, advocacy, and community. Their work reminds us that innovation isn't only found in laboratories or boardrooms—it thrives wherever people choose to act with purpose and heart.
Zulma Williams: Inspiring Cancer Survivors Through Advocacy and Tenacity In this inspiring and essential episode of Navigating Cancer TOGETHER, host Talaya Dendy welcomes special guest Zulma Williams, a licensed clinical social worker and inspiring breast cancer survivor.Zulma shares her compelling personal journey: from immigrating to the U.S. and pursuing higher education later in life, to her personal journey through breast cancer treatment and recovery.This conversation is a vital resource for anyone facing a health challenge, focusing on the critical role of the patient.In this episode, you will gain crucial insights on:Self-Advocacy: Why being an informed and proactive patient is the most important step in your healthcare journey.Mental Well-being: Zulma's expertise on navigating anxiety, depression, and shared trauma during and after treatment.The Power of Attitude: Advice on setting boundaries, prioritizing self-care, and maintaining a positive mindset through life-altering challenges.Zulma's story and clinical experience blend to offer a powerful message of hope, tenacity, and authenticity. Don't miss her actionable advice on finding your voice and transforming your experience into a source of strength.✨Episode Highlights:08:50 Zulma's Breast Cancer Diagnosis and Treatment Journey20:38 KEY TOPIC: The Paramount Importance of Self-Advocacy in Healthcare30:55 Zulma's Insights: Addressing Anxiety, Depression, and Trauma in Recovery36:44 Practical Tips: Setting Boundaries and Prioritizing Self-Care38:25The Power of Attitude and Affirmations in Healing56:35Discussing Cultural Perspectives on Illness and Seeking TherapyTranscript: https://bit.ly/podscript173Connect & Engage with Zulma:Website & podcast: https://www.dragonflytherapyservices.netInstagram: https://www.instagram.com/theswearingtherapist/Connect with NCT: nctpodcastfan@gmail.com, https://fanlist.com/nctpodcastSupport the new Survivor Series: A mission to uncover the unfiltered reality of survivorship. Learn more here: https://givebutter.com/SurvivorSerieswithTalayaDendyNavigating Cancer TOGETHER delivers heartfelt stories and expert insights to remind you that you are not alone. Subscribe now on Spotify, Apple Podcasts, YouTube, or your favorite podcast platform.Sponsor: This episode is brought to you by On the Other Side. Thank you for your support!Hosted, Produced, Written, and Edited by: Talaya DendyDisclaimer: The information on this podcast is for general informational purposes only and SHOULD NOT be used as a substitute for sound professional medical advice, evaluation, or care from your physician or other qualified health care provider.Hosted by Ausha. See ausha.co/privacy-policy for more information.
Jennifer J. Brown is a scientist, a writer, and a mother who never got the luxury of separating those roles. Her memoir When the Baby Is Not OK: Hopes & Genes is a punch to the gut of polite society and a medical system that expects parents to smile through trauma. She wrote it because she had to. Because the people who gave her the diagnosis didn't give her the truth. Because a Harvard-educated geneticist with two daughters born with PKU still couldn't get a straight answer from the very system she trained in.We sat down in the studio to talk about the unbearable loneliness of rare disease parenting, the disconnect between medical knowledge and human connection, and what it means to weaponize science against silence. She talks about bias in the NICU, the failure of healthcare communication, and why “resilience” is a lazy word. Her daughters are grown now. One's a playwright. One's an artist. And Jennifer is still raising hell.This is a conversation about control, trauma, survival, and rewriting the script when the world hands you someone else's lines.Bring tissues. Then bring receipts.RELATED LINKS• When the Baby Is Not OK (Book)• Jennifer's Website• Jennifer on LinkedInFEEDBACKLike this episode? Rate and review Out of Patients on your favorite podcast platform. For guest suggestions or sponsorship inquiries, visit outofpatients.show.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.
Send us a textIn June, the Fatty Liver Foundation officially launched the Stephen A. Harrison Patient Advocacy program and announced its first class of 20 Fellows. In today's conversation, the program's organizers, Fatty Liver Foundation President Wayne Eskridge and Program Co-ordinator Elena Samsonova, share the program's goals and objectives with Louise Campbell and Roger Green. The bulk of this conversation focuses on the program's goals and scope for its first year. First, though, Harrison Fellow Julie Peyout from Canada describes what it means to her to be part of the program. (Julie's connection was interrupted while her colleagues were answering this question earlier in the roundtable.)Wayne points out that, while the FLF originally focused on NAFLD and NASH, the new nomenclature has led them to broaden their focus to all forms of SLD. (He plans to rebrand as the Steatotic Liver Foundation.)Elena describes the program's four "pillars": Mentorship - Having an experienced advocate guide each Fellow as they pursue the next steps in their advocacy.Education - Learning more about SLD.Networking - Connecting with other advocates and industry decision-makers at conferences.Fellowship - Supporting each other as they grow new skills and have new experiences. Wayne elaborates on some of the "robust flow of information" the Fellows will receive. He focuses on three areas: what he calls "the nuts and bolts of the regulatory process", clinical trials from the researcher and trialist perspectives and more general information about how different functions inside a pharmaceutical company work. As the conversation winds down, Roger cites this podcast's mission to "make a big fat dent in MASH" and asks the Fellows about the dent they anticipate making. Elena responds with a story from the previous week's meetings, during which another Fellow stated that when she has participated in trials, she has never received information on what the trial results and learnings actually showed. Elena describes watching clinicians and trialists respond by discussing ways participants could receive such information in the future.
Send us a textThe original roundtable has three segments. Surfing the MASH Tsunami is preempting the third segment, which will be posted next week, to share our co-hosts' reactions to the positivity and energy they felt from a group of empowered SLD advocates. Immediately after the roundtable, Louise suggested to Roger that they record a separate conversation sharing their reactions to what they had just witnessed. They turned the recording equipment on and resumed their conversation.Roger starts by noting that this is the first SurfingMASH episode comprised entirely of patient advocates at a moment when advocates felt empowered and optimistic. (Also, the Fellows were the first advocates to appear on SurfingMASH who are not part of the Advocate KOL community.)For Louise, her overpowering reaction is to the passion, because passion breeds energy and empowerment. She notes that the SLD advocates came from an array of liver-related backgrounds and from HIV, the original sources of truly empowered patients some 30 years ago. Roger shares two thoughts. As he listened to the roundtable, he recalled earlier episodes, some four to five years ago, when it seemed that the physician KOL community was not in sync with the patient advocates' goals and needs. Continuing along this train of thought, he discusses the shift in identity from “MASH patient” to “person living with MASH.” To Roger, the term "MASH patient" suggests a person defined by the disease, whereas the term "patient living with MASH" empowers individual patients to manage the disease and its place in their lives in whatever way they choose. The advocates, he says, choose to learn and speak out confidently. During the roundtable, Elena mentioned Úna Keightly, a Harrison Fellow from Ireland, who spoke from the floor at Paris MASH to request that patients learn about the outcomes of the trials in which they participate, whether the outcome is deemed a success or a failure. For the "MASH patient," a failed trial feels like a personal failure, but for a "person living the MASH," even the failed trial becomes an opportunity to learn about the disease and contribute to a long-term solution. Louise mentions a comment from Harrison Fellow Pam Miller about her cardiologist giving her a potentially hepatotoxic medication without considering Pam's liver status. This reminded both Louise and Roger of a comment former Global Liver Institute President Donna Cryer made years ago to the effect of "it doesn't matter what kills me. If I'm dead, I'm dead." From here, the conversation shifts to other changes in disease description Louise and Roger foresee:Describing the disease itself in more accessible terms, such as "liver stiffness" vs. "fibrosis level."Increasing the groups of attendees at events to include not only patients, but also the APPs who will provide much of the actual patient-level care.Educating those who still mischaracterize MASLD as “a bit of fat” that requires no action. Focusing more attention on post-menopausal women, who Louise notes are most likely to exhibit advanced SLD and cirrhosis. Being more sensitive to issues that drive changes in patients' quality of life, which might be the impact of hepatic encephalopathy, but might also relate to lean mass wasting with incretin agonists. Both foresee a growing “army” of advocates that can drive earlier detection, smarter trial design, and better everyday care. They cite some specific examples from the Fellows in the roundtable and others from their own life experiences.Ultimately, Louise and Roger share their belief that this program is an excellent tribute to Stephen Harrison, who strongly believed in the importance of patient advocates and the messages they convey.
Send us a textIn June, the Fatty Liver Foundation officially launched the Stephen A. Harrison Patient Advocacy program and announced its first class of 20 Fellows. In today's conversation, Louise Campbell and Roger Green interview the founders to learn what motivated them to launch this program, and we meet five of the initial Fellows. Program Co-ordinator Elena Samsonova opens the conversation by celebrating last week's onboarding of 20 inaugural Fellows and the chemistry between them. She goes on to introduce five of them:Steven Rodrigues (ALD, UK citizen) shares his recent experience giving a 15-minute national interview on BBC Radio 5 discussing ALD clinical insights. Silvana Lesidrenska (Hepatitis B, Bulgaria) shares her desire to learn more about SLD as part of her advocacy leading a liver patients association in Bulgaria. Julie Peyout (MASH, Canada) is a great-grandmother who was recently found free after therapy for Non-Hodgkin's Lymphoma. Pam Miller (MASH cirrhosis, US) learned 24 years ago that she had MASH cirrhosis when her surgeon aborted a bariatric procedure. Since then, she has lived with cirrhosis and experienced hepatic encephalopathy (HE). She has participated in clinical trials, lobbied legislators, and collaborated with professional societies. Melanie Smith (MASH cirrhosis, US) has lived with stage-4 MASH cirrhosis since age 36 (sixteen years ago) and experiences hepatic encephalopathy (HE). She has led support groups for over a decade. Next, Fatty Liver Foundation President Wayne Eskridge recounts the program's foundational story. He describes Stephen as a man with a genuine commitment to patients and his passing as a "tremendous loss." This led Wayne to discuss this idea with Rebecca Taub of Madrigal, "another one of my heroes." (Madrigal supports this program.) Elena describes how she joined the FLF to lead this program. Roger asks the Fellows where and how they intend to make a difference. Their goals vary, from working in a Biopharma company advocating for patients to "going to the top," perhaps even lobbying the HHS Secretary, to expanding their own education and knowledge about the various forms of SLD.
Send us a text00:00:00 - Surf's Up: Season 6 Episode 14Louise Campbell and Roger Green interview key players in the inaugural Dr. Stephen A. Harrison Patient Advocacy Fellowship program, including Wayne Eskridge of the Fatty Liver Foundation (FLF), which initiated the program, Program Coordinator Elena Samsonova, and five Harrison Fellows.00:05:08 - Part I: How the Harrison Fellowship Came To BeElena opens by celebrating last week's onboarding of 20 inaugural Fellows and the chemistry between them. She goes on to introduce five of them:Steven Rodrigues (ALD, UK citizen) shares his recent experience giving a 15-minute national interview on BBC Radio 5 discussing ALD clinical insights. Silvana Lesidrenska (Hepatitis B, Bulgaria) shares her desire to learn more about SLD as part of her advocacy leading a liver patients association in Bulgaria. Julie Peyout (MASH, Canada) is a great-grandmother who was recently found free after therapy for Non-Hodgkin's Lymphoma. Pam Miller (MASH cirrhosis, US) learned 24 years ago that she had MASH cirrhosis when her surgeon aborted a bariatric procedure. Since then, she has lived with cirrhosis and experienced hepatic encephalopathy (HE). She has participated in clinical trials, lobbied legislators, and collaborated with professional societies. Melanie Smith (MASH cirrhosis, US) has lived with stage-4 MASH cirrhosis since age 36 (sixteen years ago) and experiences hepatic encephalopathy (HE). She has led support groups for over a decade. Next, Wayne recounts the program's foundational story. He describes Stephen as a man with a genuine commitment to patients and his passing as a "tremendous loss." This led Wayne to discuss this idea with Rebecca Taub of Madrigal, "another one of my heroes." (Madrigal supports this program.) Elena describes how she joined the FLF to lead this program. Roger asks the Fellows where and how they intend to make a difference. Their goals vary, from working in a Biopharma company advocating for patients to "going to the top," perhaps even lobbying the HHS Secretary, to expanding their own education and knowledge about the various forms of SLD. 00:34:46 - Part II: Goals of the Harrison Fellowship ProgramThis conversation focuses on the program's goals and scope for its first year. Wayne points out that, while the FLF originally focused on NAFLD and NASH, the new nomenclature has led them to broaden their focus to all forms of SLD. (He plans to rebrand as the Steatotic Liver Foundation.)Elena, it describes the program's four "pillars": Mentorship - Having an experienced advocate guide each Fellow as they pursue the next steps as Advocates.Education - Learning more about SLD.Networking - Connecting with other advocates and industry decision-makers at conferences.Fellowship - Supporting each other as they grow new skills and have new experiences. 00:55:09 - Experts: Louise and Roger Discuss This RoundtableRoger and Louise share their enthusiasm for the unprecedented sense of empowerment they felt among patient advocates while leading this discussion. Both comment on the identity shift from “MASH patient” to “person living with MASH.” Louise mentions that doctors or APPs still minimize disease by characterizing MASLD as “a bit of fat” that requires no action. Roger suggests that focusing on the total patient will include not only the efficacy of medicines but also potential side effects or safety concerns. Louise comments that advanced disease and cirrhosis occur most often in post-menopausal women with cirrhosis, and discusses implications. Both foresee a growing “army” of advocates that can drive earlier detection, smarter trial design, and better everyday care.01:11:11 - Business Report
This episode of Standard Deviation features Oliver Bogler in conversation with Dr Na Zhao, a cancer biologist caught in the crossfire of science, politics, and survival. Na's life reads like a brutal lab experiment in persistence.She grew up in China, lost her mother and aunt to breast cancer before she turned twelve, then came to the United States to chase science as both an immigrant and a survivor's daughter. She worked two decades to reach the brink of independence as a cancer researcher, only to watch offers and grants vanish in the political chaos of 2025.Oliver brings her story into sharp focus, tracing the impossible climb toward a tenure-track position and the human cost of a system that pulls the ladder up just as people like Na reach for it. This conversation pulls back the curtain on the NIH funding crisis, the toll on early-career scientists, and what happens when personal tragedy fuels professional ambition.Listeners will walk away with a raw sense of how fragile the future of cancer research really is, and why people like Na refuse to stop climbing.RELATED LINKSDr Zhao at Baylor College of MedicineDr Zhao on LinkedInDr Zhao's Science articleIndirect Costs explained by US CongressFEEDBACKLike 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, Dr. Karen Litzy speaks with Steve Lewis, founder of Nabu, about the importance of empowering patients through technology. Steve shares his personal journey from working with musicians to developing a health tech startup aimed at improving patient care. The conversation explores the challenges of creating a health tech product, the importance of communication in healthcare, and the future of patient advocacy. Steve emphasizes the need for comprehensive tools that help patients manage their health information and advocate effectively for themselves. Takeaways · His daughter's health challenges inspired Steve's journey into health tech. · Naboo aims to provide a single source of truth for patient information. · Effective communication is crucial for patient care and adherence. · Building a health tech startup requires understanding the needs of all stakeholders. · Safety and compliance are paramount in developing health tech solutions. · Patients need tools that help them advocate for their own care. · The entrepreneurial journey involves collaboration and community support. · Technology can enhance the patient experience and improve outcomes. · Don't hesitate to share your ideas and seek feedback. · Financial literacy is essential for aspiring entrepreneurs. Time Stamps: 00:00 Introduction to Patient Empowerment 03:11 The Journey from Music to Medicine 05:55 The Birth of Nabu: A New Tool for Patients 08:42 Building a Health Tech Startup 12:01 Navigating Challenges in Health Tech 14:50 The Importance of Communication in Healthcare 17:57 Enhancing Patient Care with Technology 20:42 Safety and Compliance in Patient Care 23:49 His daughter's Experience with Nabu 26:52 The Future of Patient Advocacy 29:41 Entrepreneurial Insights and Advice More About Steve:Steve Lewis is an internationally recognised healthtech founder, product leader, and patient advocate, known for building breakthrough solutions at the intersection of technology and real-world care. As Founder and CEO of Nabu.ai, Steve is on a mission to transform fragmented health information into a single, actionable source of truth for patients, families, and care teams. With over 20 years of experience spanning creative, brand strategy, product design, digital transformation, and startup leadership, Steve's work is informed by both professional expertise and deeply personal experience. His daughter's early arrival in the NICU and complicated health journey catalysed his relentless pursuit to fix the fragmented care journey as an advocate, an insight that powers Nabu's vision for a truly comprehensive patient- and carer-led technology addressing the most critical problems in health. Steve is rapidly emerging as a sought-after voice in digital health and innovation. He has been invited to share his authentic, “from the front lines” perspective at live events and on leading digital health podcasts. Steve's talks explore themes including AI for health equity, patient empowerment, data privacy, and the future of connected care, resonating with audiences for their candor and real-world relevance. A passionate believer in co-design and inclusion, Steve is actively collaborating with Australia's leading healthcare providers to validate the Nabu Advocate platform and drive innovation in its core feature set. By working closely with clinicians, families, special needs communities, and expert advisory boards, Steve ensures Nabu is built to meet real-world needs and deliver meaningful impact. Steve's story, which is rooted in resilience, empathy, and systems change resonates with audiences from hospital executives to grassroots advocates. Whether on stage, on air, or in the boardroom, he is known for challenging the status quo and inspiring others to put patient voices at the centre of healthcare transformation. Resources from this Episode: Nabu Website Steve on LinkedIn Jane Sponsorship Information: Book a one-on-one demo here Mention the code LITZY1MO for a free month Follow Dr. Karen Litzy on Social Media: Karen's Instagram Karen's LinkedIn Subscribe to Healthy, Wealthy & Smart: YouTube Website Apple Podcast Spotify SoundCloud Stitcher iHeart Radio
In this powerful episode of Love Conquers Alz, Susie Singer Carter and Don Priess sit down with Neal K. Shah, visionary founder and CEO of CareYaya, a groundbreaking platform that connects families with compassionate, college-educated student caregivers. Neal shares how his personal caregiving journey inspired him to reimagine elder care, creating affordable, dignified, and deeply human support that benefits both older adults and the next generation of healthcare professionals.Together, they explore the urgent need to bridge generational divides, destigmatize dementia, and cultivate empathy in future doctors and nurses by immersing them in real-life caregiving experiences. Neal also opens up about his new book, "Insured to Death", which takes aim at the rising crisis of AI-driven healthcare claim denials and the devastating toll they take on patients and families.From stories of students forming life-changing bonds with people living with dementia, to hard truths about our broken long-term care and insurance systems, this conversation is both eye-opening and hopeful. It's a reminder that caregiving—when rooted in love, purpose, and community—has the power to transform lives.Counterforce HealthCareyaya.orgSupport the showNo Country For Old People; a Nursing Home Exposé is STREAMING NOW on Amazon Prime (https://www.amazon.com/gp/video/detail/B0F7D1RR5X/ref=atv_dp_share_cu_r) Please watch. Review. Share. Be a ROAR-ior!! JOIN THE R.O.A.R. MOVEMENT for quality long term care! Visit the No Country For Old People Website for more information.YOU CAN ALSO SUPPORT THE ABSOLUTELY CRUCIAL PROMOTION OF OUR DOCUMENTARY "NO COUNTRY FOR OLD PEOPLE" BY MAKING A TAX DEDUCTIBLE DONATION THROUGH THE NATIONAL CONSUMER VOICE HERE Follow us on Twitter, FB, IG, & TiK Tok
If you've ever felt trapped by the traditional health insurance system—high premiums, endless bureaucracy, and the frustration of fighting for coverage—you'll want to hear this. In this episode, I sit down with Andy Schoonover, founder and CEO of CrowdHealth, a community-powered alternative to health insurance that uses crowdfunding to pay medical bills directly. I recently became a CrowdHealth member myself and, for the first time in my adult life, happily don't have health insurance anymore. Andy breaks down exactly how CrowdHealth works, why he built it, and what makes it different from anything else out there. We talk about: Why paying doctors directly creates better healthcare How emergencies, pregnancies, and even cancer treatments are handled What happens when bills reach hundreds of thousands of dollars Whether preventative care like acupuncture is supported How CrowdHealth members are incentivized to stay healthy And what the future of healthcare could look like if people took power back from insurance companies Andy Schoonover is founder and CEO of CrowdHealth, a community-powered alternative to health insurance that provides a revolutionary way of paying for healthcare bills through crowdfunding. Schoonover was previously CEO of VRI, a healthcare technology company focused on monitoring patients with chronic conditions out of their homes. He is a graduate of the University of Virginia and Stanford University's Graduate School of Business. Sponsored By: → CURED | Right now, CURED Nutrition is offering my listeners an exclusive 20% off ON TOP OF the 10% off Best Seller Bundle. Just head to https://www.curednutrition.com/CLAUDIA and use the code CLAUDIA at checkout → PUORI | Shop Puori grass-fed protein powder + supplements (Clean Label Certified and third-party tested!!!) Use discount code: HEALINGTHESOURCE Interested or ready to join CrowdHealth? Use code CLAUDIA to get a major discount: $99/month for your first 3 months of membership! Follow the host, Claudia, on Instagram, check out HealingTheSource.co & Elham's Liquid Gold 100% Organic Castor Oil, and enjoy her deep-dives on Substack
Lea was just 12 when her symptoms began, but six years passed before doctors finally gave her an MG diagnosis. In that time, she lost the ability to walk, speak, and swallow, yet never lost her determination to live fully. Join Martine as Lea shares her journey from Germany and how the fight to find a diagnosis crosses every border.See omnystudio.com/listener for privacy information.
Welcome to the Health Marketing Collective, where strong leadership meets marketing excellence.On today's episode, Sara Payne sits down with Emily Hansen, Senior Director of the Resensation program at Axogen, to discuss how healthcare brands can leverage thought leadership to reshape public perceptions, influence behavior change, and ultimately become architects of a health revolution.As a specialist in advocacy and education, Emily champions awareness about a lesser-known but highly prevalent outcome of breast cancer surgery: chronic numbness following a mastectomy. Through her work at Axogen, she's spearheading a movement to empower breast cancer patients and their care teams with knowledge and solutions that can dramatically enhance quality of life beyond survival—focusing on nerve repair and the pioneering Resensation procedure.In this thought-provoking conversation, Sara and Emily explore the intersection of marketing, education, and advocacy. They dive into the challenges of raising awareness about health issues shrouded by misconceptions, the vital role of patient advocates, and how moving beyond short-term wins toward long-term health movements is key to redefining standards of care. You'll hear about real strategies for engaging the survivor community, addressing clinician knowledge gaps, and the ongoing effort to translate awareness into tangible business and health outcomes.Thank you for being part of the Health Marketing Collective, where strong leadership meets marketing excellence. The future of healthcare depends on it.Key Takeaways:Marketing as a Catalyst for Health Movements:Emily illustrates how powerful marketing can spark a health movement—even for issues that have been historically overlooked. By focusing efforts on educating both patients and clinicians about post-mastectomy numbness and offering actionable solutions, the Resensation program exemplifies marketing's role in not just awareness, but wholesale perception change within healthcare.Stakeholder-Centric Communication:Reaching both patients and providers requires tailored messaging and a multi-pronged approach. Emily explains that effective campaigns must bridge awareness gaps in diverse audiences, from general consumers and advocacy groups to the full spectrum of clinicians. The Resensation team balances highly technical provider information with relatable patient stories to ensure relevance and clarity across all touchpoints.The Power (and Sensitivity) of Patient Advocacy:Patient advocates are not mere influencers; they are individuals with lived experiences and deep personal investment. Emily shares how collaborating authentically with survivor communities—such as The Breasties—can accelerate education and trust. She emphasizes the importance of letting advocates' voices lead and prioritizing the issue above the brand to build an enduring movement.Long-Term Commitment Over Short-Term Wins:Creating lasting change in public and professional awareness isn't achieved through one-off major media hits. Instead, it demands continuous investment, evolving narratives, and relationship-building across years. Emily underscores that consistent, layered outreach (PR, education, advocacy partnerships, and digital content) is essential for sustaining momentum and meeting both patient and business objectives.Measuring Impact: Business and Behavioral Outcomes:The Resensation campaign's success isn't just marked by media impressions, but by tangible growth in web traffic, patient referrals, and most compellingly, provider demand for training. Emily discusses the importance of presenting both quantitative metrics and qualitative anecdotes to executive leaders as evidence of progress, and how adapting data models helps demonstrate true business value over time.For more information about the Resensation program, including educational resources and a...
Katie Henry has seen some things. From nonprofit bootstraps to Big Pharma boardrooms, she's been inside the machine—and still believes we can fix it. We go deep on her winding road from folding sweaters at J.Crew to launching a vibrator-based advocacy campaign that accidentally changed the sexual health narrative in breast cancer.Katie doesn't pull punches. She's a born problem solver with zero tolerance for pink fluff and performative empathy. We talk survivor semantics, band camp trauma, nonprofit burnout, and why “Didi” is the grandparent alter ego you never saw coming.She's Murphy Brown with a marimba. Veronica Sawyer in pharma. Carla Tortelli with an oncology Rolodex. And she still calls herself a learner.This is one of the most honest, hilarious, and refreshingly real conversations I've had. Period.RELATED LINKS:Katie Henry on LinkedInKatie Henry on ResearchGateLiving Beyond Breast CancerNational Breast Cancer CoalitionFEEDBACK: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.
Dr. Hoffman continues his conversation with Nicole Bell, the CEO of Galaxy Diagnostics and author of “What Lurks in the Woods.”
This episode of the Intelligent Medicine podcast is a deep dive into the complexities of Lyme disease and other tick-borne illnesses. Nicole Bell, the CEO of Galaxy Diagnostics and author of “What Lurks in the Woods,” details the challenges of diagnosing tick-borne diseases, the limitations of current diagnostic tests, and the controversy around treatment methodologies. Nicole shares her personal journey that led her to this field after her husband was misdiagnosed with early-onset Alzheimer's, which was later revealed to be caused by advanced Lyme disease. They also discuss new diagnostic techniques, the importance of personalized treatment plans, and ongoing advocacy efforts to improve awareness and research funding for Lyme disease.
Blind biopsies leave questions unanswered. In this episode of BackTable OBGYN, host Dr. Mark Hoffman welcomes back Dr. Linda Bradley, an expert in obstetrics, gynecology, and hysteroscopy from the Cleveland Clinic, to discuss the benefits and advancements of direct visualized endometrial sampling over traditional blind biopsy techniques. ---This podcast is supported by:Medtronichttps://www.medtronic.com/en-us/healthcare-professionals/specialties/gynecology/product-portfolio.html---SYNPOSISDr. Bradley emphasizes the importance of hysteroscopy for accurate diagnosis and treatment of various gynecological issues, including abnormal uterine bleeding. They explore the limitations of blind biopsies and the advantages of hysteroscopy in detecting focal lesions, avoiding unnecessary hysterectomies, and ensuring patient safety. The discussion also touches on the economic and procedural challenges in adopting hysteroscopy more widely in clinical practice.---TIMESTAMPS00:00 - Introduction 03:30 - The Evolution of Hysteroscopy at Cleveland Clinic04:49 - Challenges and Innovations in Hysteroscopy06:30 - Clinical Insights: Direct Visualized Endometrial Sampling12:03 - Case Studies and Practical Applications15:46 - The Importance of Visual Examination in Gynecology20:03 - Advocating for Hysteroscopy in Medical Practice31:07 - Patient History and Trauma Considerations31:34 - Cancer Detection and Missed Diagnoses32:14 - Challenges with Unscheduled Bleeding32:56 - Case Study: Blood Transfusions and Hysterectomy33:38 - Importance of Hysteroscopy34:43 - Hysteroscopy Techniques and Best Practices37:41 - Ultrasound and SIS (Saline Infusion Sonohysterography) for Imaging38:45 - Post-Operative Care and Follow-Up47:41 - Environmental and Economic Considerations in Healthcare52:51 - Final Thoughts and Patient Advocacy
In this episode of Cheat Codes, Dr. Z and Dr. C are joined by renowned advocates TaLana Hughes and Cassandra Trimnell to explore what “the sickle cell community” truly means. They discuss how patients, caregivers, providers, and allies form interconnected, and often overlapping, communities that bring hope, support, and change. From building trust to celebrating wins, the conversation highlights the power of connection, the importance of access to information, and how to find your “tribe” in the sickle cell space. Whether local or global, online or in person, community remains the heartbeat of progress in sickle cell disease. 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.
Corbin is an engineer who faced a dual diagnosis with a 1.8% survival rate as a problem to solve. He didn’t see despair with that number - he saw a possibility. The possibility that, if he was able to keep living, doctors would find a way to increase that number significantly. He did, and today he’s doing well. Crucial to his determination was the CIDP community, which welcomed him with open arms. Corbin shares how he found his community and his jump from advocating for himself to advocating for a movement. See omnystudio.com/listener for privacy information.
What happens when you hand a mic to the most extroverted, uncensored Gen Z career coach in New York? You get Olivia Battinelli—adjunct professor, student advisor, mentor, speaker, and unfiltered truth-teller on everything from invisible illness to resume crimes.We talked about growing up Jewish-Italian in Westchester, surviving the Big Four's corporate Kool-Aid, and quitting a job after 7 months because the shower goals weren't working out. She runs NYU Steinhardt's internship program by day, roasts Takis and “rate my professor” trolls by night, and somehow makes room for maple syrup takes, career coaching, and a boyfriend named Dom who sounds like a supporting character from The Sopranos.She teaches kids how to talk to humans. She's allergic to BS. And she might be the most Alexis Rose-meets-Maeve Wiley-mashup ever dropped into your feed. Welcome to her first podcast interview. It's pure gold.RELATED LINKS:Olivia Battinelli on LinkedInOlivia's Liv It Up Coaching WebsiteOlivia on InstagramNYU Steinhardt Faculty PageFEEDBACK: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.
Sophie Sargent walked into the studio already owning the mic. A pandemic-era media rebel raised in New Hampshire, trained in Homeland Security (yep), and shaped by rejection, she's built a career out of DM'ing her way into rooms and then owning them. At 25, she's juggling chronic illness, chronic overachievement, and a generation that gets dismissed before it even speaks.We talk Lyme disease, Lyme denial, and the healthcare gaslighting that comes when you “look fine” but your body says otherwise. We dive into rejection as a career accelerant, mental health as content porn, and what it means to chase purpose without sacrificing identity. Sophie's a former morning radio host, country music interviewer, and Boston-based creator with a real voice—and she uses it.No fake podcast voice. No daddy-daughter moment. Just two loudmouths from different planets figuring out what it means to be seen, believed, and taken seriously in a system designed to do the opposite.Spoiler: She's smarter than I was at 25. And she'll probably be your boss someday.RELATED LINKSSophie on InstagramSophie on YouTubeSophie on LinkedInMedium article: “Redefining Rejection”See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.
Texas' bioscience boom drives U.S. innovation and security, advancing biotech for better patient access, strong advocacy, and lifesaving care.See omnystudio.com/listener for privacy information.
In this episode, we begin with a brief introduction of our podcasters, Tom DeSilvio, Brennan Flannery, Yash Singh, and Ghazal Zandieh, before welcoming Dr. Gary Luker, Editor‑in‑Chief of the RSNA journal, Radiology: Imaging Cancer. Our goal is to showcase and better introduce the journal while highlighting the future of individualized cancer imaging. Dr. Luker joins us to discuss how advanced imaging, artificial intelligence, and translational research are transforming personalized cancer care.
How This Is Building Me, hosted by world-renowned oncologist D. Ross Camidge, MD, PhD, is a podcast focused on the highs and lows, ups and downs of all those involved with cancer, cancer medicine, and cancer science across the full spectrum of life's experiences. In this episode, Dr Camidge sat down with Ken Culver, MD, the director of Research and Clinical Affairs at ALK Positive Inc. Drs Camidge and Culver discussed the highlights of Dr Culver's career, which has been shaped by clinical practice, research, industry leadership, and patient advocacy. They noted elements of ALK Positive that set it apart from other patient advocacy groups, including its being entirely created, funded, and led by patients with stage IV lung cancer and their caregivers. Culver explained how he collaborates with patients to expand treatment opportunities, meets with companies and universities worldwide, and helps stakeholders recognize both the unmet needs and financial incentives for developing therapies for ALK-positive lung cancer. Culver detailed his path to the oncology field, which began with an intention to practice as a community pediatrician in Iowa. This led him to pursue residency training in California, where he gained diverse clinical experience, particularly in HIV/AIDS at the height of the epidemic. His early research explored HIV transmission in children born to drug-using mothers, highlighting the immunosuppressive effect of drug abuse even in the absence of HIV. During his fellowship, he contributed to pioneering work in gene therapy. He also participated in research that laid the groundwork for tumor-directed therapies, which later influenced large-scale clinical trials. Eventually, Culver explained that transitioned to industry. At Novartis, he contributed to the development of important drugs and witnessed the transformative launch of imatinib (Gleevec), one of the first targeted cancer therapies. Alongside his professional work, Culver established the Foundation for Peace, a nonprofit providing medical and community support in the Dominican Republic, Haiti, and Kenya. This initiative, which began with a mission trip in 1989, has grown to involve hundreds of volunteers annually, offering both medical care and broader community services. In his current role with ALK Positive, Culver noted that he has leveraged patient-led advocacy to influence industry priorities, resulting in several new clinical trials for ALK-positive patients. His work emphasizes balancing discovery research with near-term clinical opportunities to directly benefit patients with cancer today. He also shared how he prioritizes tools to empower patients, such as clinical trial finders, and stressed the importance of having contingency plans before disease progression. Overall, this conversation highlights a career that reflects a consistent commitment to science, patient care, and global service, guided by both professional and humanitarian values.
This episode is sponsored by Invivyd, Inc.Marc Elia is a biotech investor, the Chairman of the Board at Invivyd, and a Long COVID patient who decided to challenge the system while still stuck inside it. He's not here for corporate platitudes, regulatory shoulder shrugs, or vaccine-era gaslighting. This is not a conversation about politics, but it's about power and choice and the right to receive care and treatment no matter your condition.In this episode, we cover everything from broken clinical pathways to meme coins and the eternal shame of being old enough to remember Eastern Airlines. Marc talks about what it means to build tools instead of just complaining, what Long COVID has done to his body and his patience, and why the illusion of “choice” in healthcare is a luxury most patients don't have.This conversation doesn't ask for empathy. It demands it.RELATED LINKSMarc Elia on LinkedInInvivyd Company SiteMarc's Bio at InvivydFEEDBACKLike 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.
Sunday, September 7, 2025. Week 37. Why does CURE SYNGAP1 aka SRF matter? Do PAGS make a difference? Heck yes. Empower Families - Support. Educate. Activate. Coordinate. Use Money Catalytically - Tax advantage. Pool. Manage. Make Catalytic. Focus. Manage. Partner with Science & Medicine - Push forward. Connect efforts. Focus on Tx. Work in Clinic. Leverage Ecosystem. Industry. PAGs. Superpags (CB, GG, ELF). Ensure Continuity. Our kids will outlast us. Our energy wanes. Life happens. Cure SYNGAP1 never stops focusing on the biggest challenge in our lives: SRD. Because you VOLUNTEER Join us: https://curesyngap1.org/volunteer-with-srf/ Gala video: Look at those faces.https://www.youtube.com/watch?v=d6dCSBq27Gc Friday: Beacon of Hope September 12, 2025 - Boston, MA cureSYNGAP1.org/Beacon25 Scramble for SYNGAP October 4, 2025 - Greer, SC cureSYNGAP1.org/Scramble
Most people think electroshock therapy was abandoned decades ago. The unfortunate truth is it's still widely used, with well over 100,000 (probably much higher) Americans receiving ECT every year.Yet the devices have never been properly safety tested.In this episode, Dr. Roger McFillin sits down with Sarah Price Hancock, a certified rehabilitation counselor, educator, and survivor who underwent 116 ECT treatments. Sarah lost 85–90% of her memories from the first 36 years of her life, developed neurological complications, and later learned her original psychiatric symptoms weren't even a mental illness.Life After ECT website Dr. 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
Send us a textSome healthcare professionals are nice. Some would go so far as to call themselves “body positive" or “HAES aligned”. But being pleasant doesn't make you safe for fat patients. There's a crucial difference between practitioners who are steadfastly kind while perpetuating harm, and those who actively work to counter medical weight bias. In this episode, I expose why often times anti-diet isn't enough, how well-meaning professionals can cause more damage than obvious bigots, and why fat people are trapped in an endless cycle of seeking help, getting weight loss advice, and avoiding care until they're desperate. I challenge anti-diet practitioners to move beyond good intentions and actually do the work to become weight-inclusive. Plus, I debunk the dangerous myths about anaesthesia safety that are used to deny fat people surgery. Want to learn more about anaesthesia? Then check out my masterclass today!Got a question for the next podcast? Let me know! Connect With Me WEEKLY NEWSLETTER: Get a free script when you sign up THE WEIGHTING ROOM: A community where authenticity thrives and every voice matters The CONSULTING ROOM: Get answers to all your medical questions via DM or Voice Note PLUS access to my entire library of paid resources CONSULTATION: For the ultimate transformation in your healthcare journe THE WEIGH FORWARD: For people who are being denied surgery because of their weight FREE GUIDES:Evidence-based, not diet nonsense Find me on Instagram, YouTube, and LinkedIn.
After years of carrying the weight of lead, Shannon and Cooper find a path out from under the darkness and into the sunlight.LEAD: how this story ends is up to us is an audio docudrama series that tells the true story of one child, his mysterious lead poisoning, and his mother's unwavering fight to keep him safe. A true story written by Shannon Burkett. Directed by Alan Taylor. Starring Merritt Wever, Alessandro Nivola, Cynthia Nixon, and Cooper Burkett.Lead was produced by Shannon Burkett. Co-produced by Jenny Maguire. Featuring Amy Acker, Tom Butler, Dennis T. Carnegie, James Carpinello, Geneva Carr, Dann Fink, Alice Kris, Adriane Lenox, Katie O'Sullivan, Greg Pirenti, Armando Riesco, Shirley Rumierk, Thom Sesma, and Lana Young. Music by Peter Salett. “Joy In Resistance” written by Abena Koomson-Davis and performed by Resistance Revival Chorus. Casting by Alaine Alldaffer and Lisa Donadio. Sound Design by Andy Kris. Recording Engineer Krissopher Chevannes.For corresponding visuals and more information on how to protect children from lead exposure please go to https://endleadpoisoning.org.See Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.
The deficits from the lead poisoning continue to intensify, Shannon channels her anger and grief into holding the people who hurt her son responsible.LEAD how this story ends is up to us is a true story written and produced by Shannon Burkett. Co-produced by Jenny Maguire. Directed by Alan Taylor. Starring Merritt Wever, Alessandro Nivola, Cynthia Nixon, and Cooper Burkett.EP4 features Eboni Booth, Sasha Eden, Kevin Kane, April Matthis, Alysia Reiner, and Mandy Siegfried. Casting by Alaine Alldaffer and Lisa Donadio. Music by Peter Salett. Sound Design by Andy Kris. Recording Engineer Krissopher Chevannes.For corresponding visuals and more information on how to protect children from lead exposure please go to https://endleadpoisoning.org.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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