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Immune Deficiency Foundation

Immune Deficiency Foundation

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This podcast is a service of the Immune Deficiency Foundation — a nonprofit organization dedicated to improving the diagnosis, treatment, and quality of life of people diagnosed with primary immunodeficiency, or PI. "Bold Conversations" is a program that explores the harsh realities of health access in the United States. Hosted by Dr. Nicole Rochester. "Undiagnosed" is a narrative docuseries on that tells the true stories of PI patients and their long journeys to proper diagnosis and treatme ...
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Hello and welcome to Untangling PANDAS & PANS, a podcast about two relatively unknown medical disorders characterized by the sudden and dramatic onset of obsessions and compulsions, vocal or motor tics, or restricted eating behavior -- and a whole host of other symptoms -- following strep or other bacterial or viral infection. Sometimes overnight. I have the privilege of interviewing some of the top researchers and clinicians in the rapidly growing field of Infection-Associated, Immune-Media ...
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This podcast series introduces i-MPACT, a multifaceted program which aims to improve the care of patients treated with immunotherapy, while providing a better understanding of the pathophysiology associated with immune-related adverse events. Each episode features an interview with a leading expert discussing proactive, longitudinal care, as well as the potential for irAEs following treatment with immunotherapy and current toxicity management strategies.
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The immune system is extremely vital for the proper functioning of our body, and important as it is, it also remains somewhat of an enigma to many of us, scientists included. With this podcast, I try to throw some light on this topic, though I must say I’m no expert authority on it, in fact quite far from it, I’m just as clueless as anyone else.
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Faith isn’t always easy when your body won’t cooperate and your plans constantly fall apart. In this raw and personal episode, I’m sharing how chronic illness is teaching me to stop performing and start trusting. From years of self-reliance to finally learning how to rest in God’s strength, this is for anyone who’s ever whispered, “God, I can’t do …
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From the 2024 Society for Leukocyte Biology meeting, Cindy and Brianne talk with Darren Lee to discuss his career, how he got interested in immunology of the eye, and how his team visualizes immune responses of the eye in real time with the hope of better understanding autoimmune uveitis. Hosts: Cindy Leifer and Brianne Barker Guest: Darren Lee Sub…
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This program is presented with support from CSL Behring, Takeda, and Grifols.Read a transcript of this episode: file:///E:/2025/Podcasts/CEO%20Updates/Transcript%20-%20CEO%20Update%20June%2025.pdfImmune Deficiency Foundation CEO Jorey Berry discusses our new text message program, an upcoming Lunch & Learn, and an exciting new volunteer opportunity.…
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How does a common strep infection become a brain disorder? Dr. Uğur Akcan's journey from Istanbul to the cutting edge of PANDAS research with Dr. Dritan Agalliu reveals the fascinating intersection of immune system and brain function that could transform how we understand and treat neuropsychiatric disorders. In this captivating conversation, Dr. A…
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What does depression really look like? For Kristen Van Horn, it didn’t mean crying in bed or skipping daily routines—it meant anger, irritability, and feeling disconnected from a life that “should” have made her happy. In this honest conversation, Kristen shares how she finally got the support she needed, what it looks like to maintain her mental h…
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Thinking of canceling travel plans because of chronic illness? In this episode, we talk about how travel can still be possible—just differently. From pacing tools to packing smart, this one’s full of real talk, tips, and encouragement to help you see the world again—on your terms. Memorable Quotes: “You’re not broken. You’re just navigating life wi…
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Vincent and Cindy discuss differences between MPox-specific T cell responses following infection and vaccination, and lymph node macrophage control of memory B cell localization and trafficking that might be important for choosing which arm to get a vaccine. Hosts: Vincent Racaniello and Cindy Leifer Subscribe (free): Apple Podcasts, RSS, email Bec…
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I’m joined by JoBeth Polley, a certified grief recovery specialist who shares her own heartbreaking story and offers hope and healing for those grieving lives they didn’t choose. ⚠️ Trigger Warning: This episode contains discussion of terminal illness, infertility, and grief. In this raw and deeply moving episode, JoBeth Polley and I talk about the…
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In this episode of The Invisible Illness Club, we’re talking about the absolute worst combo—getting sick on top of your chronic illness. I’m sharing what it felt like when I got COVID this past February (spoiler: it was brutal), why being “extra sick” hits so much harder when you already live with limited energy, and what to actually do when you’re…
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Transcript: https://primaryimmune.org/sites/default/files/APDS%20Lunch%20and%20Learn%20transcript.pdfDr. Jolan Walter (University of South Florida, Johns Hopkins All Children's Hospital) provides an explanation of genetic variants in APDS.View a PDF of this presentation: https://primaryimmune.org/sites/default/files/FOR%20WEB%20APDS%20IDF%20Lunch%2…
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What happens when the body you’ve always relied on breaks down? Jessica McGarvey knows this journey intimately. A former professional dancer turned Pilates instructor, Jessica opens up about her herniated disc injury, the long road to recovery, and how that season deepened her empathy for clients navigating invisible illness and postpartum healing.…
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From the 2024 Society for Leukocyte Biology meeting, Cindy and Brianne sit down with Justin Wilson to talk about how he got into research and his more recent studies on innate immune sensors and the interaction between the gut microbiome and inflammation related to inflammatory bowel disease and cancer. Hosts: Cindy Leifer and Brianne Barker Guest:…
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In this episode of On AIRR, Dr. Paul Thomas, reviews advances in the field of TCR sequencing. Dr. Thomas is a faculty member in the Department of Immunology of St. Jude Children’s Research Hospital. His work has advanced our understanding of innate and adaptive immune responses and TCR specificity with a focus on responses to viral infections. In E…
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If you’ve ever felt guilty for saying no, this one’s for you. Let’s talk about why living with chronic illness is a full-time job—and how setting boundaries can save your energy (and your sanity). Plus, I’ve got a brand-new resource to help: The Boundaries Reset Workbook. Memorable Quotes: “Chronic illness is a full-time job—with no PTO, no weekend…
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In this powerful episode of Untangling PANDAS and PANS, host Susan Manfull, PhD sits down with Jen, a resilient young woman whose health took a devastating and mysterious turn in her early twenties. From being taken out of work on a stretcher—twice—to struggling for answers amidst an array of debilitating physical and psychiatric symptoms, Jen shar…
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Steph talks about identification of gut bacteria that can digest protective mucosal antibodies and Vincent covers a new paper on Zika virus that implicates fetal phagocytes in brain invasion, which may provide insight into the devastating microcephaly outcome of infection during pregnancy. Hosts: Vincent Racaniello, Cindy Leifer, Steph Langel, and …
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In this episode, I’m joined by Nicole Roth—a Health Restoration & Joy Coach and longtime autoimmune warrior—who shares how she reclaimed her health and joy after years of living with Hashimoto’s. We talk about the power of mindset, the role of boundaries in healing, and how faith and nervous system regulation helped her shift from seeing herself as…
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Let’s get real: not all entrepreneurs start their day with a latte and a color-coded calendar. Some of us start it from bed—with heating pads, pill bottles, and a to-do list that flexes with our energy. In this episode, I’m sharing how I run a business while managing chronic illness, why “business as usual” doesn’t work for spoonies, and how to cre…
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I know this wasn’t the most uplifting episode—but I also know how lonely it feels to sit with scary lab results, unanswered questions, and a body that’s just not cooperating. So if you’re there right now too, please know: I see you. You’re not broken. You’re not failing. And you don’t have to face the unknown alone. Whether your kidneys are flaring…
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From the 2024 Society for Leukocyte Biology meeting, Immune talks with Holger Heine about the discovery of immune recognition of bacterial lipopolysaccharide and innate immunity to organisms within the kingdom Archaea. Hosts: Cindy Leifer and Brianne Barker Guest: Holger Heine Become a patron of Immune! Links for this episode MicrobeTV Discord Serv…
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Transcript: https://primaryimmune.org/sites/default/files/Transcript%20Shaker.pdfDr. Marcus Shaker is a professor of pediatrics in medicine at Dartmouth's Geisel School of Medicine. On this episode of the Immune Deficiency Foundation podcast, he joined staff members Angie Kotarski, community resource navigator, and Stephanie Steele, director of pay…
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Today’s episode is for the ones who miss their old selves—the energetic version who stayed out late, made spontaneous plans, and didn’t have to count spoons just to take a shower. Chronic illness brings a grief that no one prepares you for. It’s not linear, it’s not loud—but it’s real. We talk about what this grief looks like, why it comes in waves…
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Ever felt completely alone, even in a room full of people? This episode is all about that invisible ache—loneliness that isn’t about being physically alone, but about not feeling understood. When you’re living with a chronic illness, especially one others can’t see, that kind of isolation can run deep. I’m sharing a personal story that hit me hard …
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Immune talks with David Peterson and Kim Klonowski from the University of Georgia about their careers, their People, parasites, and plagues podcast, placental malaria immunity, and and how interferons in the thymus affect T cell repertoire selection. Hosts: Vincent Racaniello, Cindy Leifer, Steph Langel, and Brianne Barker Guests: David Peterson an…
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Transcript: https://primaryimmune.org/sites/default/files/Advocacy%20Day%20Training%20Transcript.pdfThis week, 150 advocates will represent the Immune Deficiency Foundation and the greater PI community on Capitol Hill in Washington, D.C. But what does that mean, exactly? Why is it important? And what are these volunteers responsible for? This episo…
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In this illuminating conversation, Dr. Sarah O'Dor—Harvard instructor and Director of Research at Massachusetts General Hospital's PANDAS Clinic—reveals how strep infections and other triggers can cause sudden, dramatic psychiatric symptoms in children and young adults. Dr. O'Dor paints a vivid picture of PANDAS (Pediatric Autoimmune Neuropsychiatr…
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Transcript: https://primaryimmune.org/sites/default/files/TRANSCRIPT%20Legislative%20webinar.pdfThis panel discussion features Immune Deficiency Foundation CEO Jorey Berry, as well as Chief Public Policy Officer Lynn Albizo, Community Resource Navigator Angie Kotarski, and Jodi Taub, owner of Jodi Taub Therapy, discuss the impact of recent federal …
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In this episode, we’re talking about the power of gratitude—not as toxic positivity, but as a tool to find hope and joy even on the hardest days. You’ll learn how gratitude rewires your brain, helps shift your focus, and creates space for both the pain and the good. 💛 Memorable Quotes: “Hope and joy feel so out of reach sometimes. But gratitude doe…
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In this first episode, I share my journey to getting diagnosed with Ankylosing Spondylitis and Fibromyalgia after years of being dismissed. I also talk about why I started The Invisible Illness Club Podcast and what you can expect—real, honest conversations about chronic illness, faith, and finding joy in the hard moments. You’re not alone here! Me…
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https://primaryimmune.org/sites/default/files/Bold%20Conversations%203.2%20Transcript.pdfIn this session from the 2024 PI Conference in Chicago, Dr. Nicole gave a very vulnerable talk about her experiences navigating the healthcare system, both as a physician and as a caregiver for her father. To learn more, volunteer, or donate, visit primaryimmun…
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From the 2024 Society for Leukocyte Biology meeting, Immune talks with Amy Hise about her career in science, her current research using mouse models for investigating fungal immunity and navigating the challenges of being a mom in science. Hosts: Cindy Leifer and Brianne Barker Guest: Amy Hise MicrobeTV Discord Server Mouse model for testing drugs …
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Transcript: https://primaryimmune.org/sites/default/files/01PROOF%20transcription%20gene%20editing%20webinar.pdfView a PDF of this presentation: https://primaryimmune.org/sites/default/files/FOR%20WEB%20-%20Gene%20editing.pdfSusan Prockop, MD​ of Boston Children's Hospital and Harvard Medical School provides an overview and recent updates to gene t…
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This podcast episode features an interview with Dr. Brent Harris, the Director of Neuropathology at Georgetown University where he wears many hats, including overseeing the Georgetown Brain Bank. In 2020, he accepted the brain of Alex Manfull who had died from complications due to PANDAS and, eventually, with the help of The Alex Manfull Fund, esta…
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Immune 90: Immunology of Injury March 25, 2025 From the 2024 Society for Leukocyte Biology meeting at Michigan State University, home of the Spartans, Immune’s Cindy and Brianne talk with Liz Kovacs and Jim Lederer about their careers, dirty mice, old mice, and immunity during trauma. Hosts: Cindy Leifer and Brianne Barker Guests: James Lederer and…
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Transcript: https://primaryimmune.org/sites/default/files/FOR%20WEB%20Undiagnosed%20Ilana%20Transcript.pdfTikTok personality and author of "Medical Gaslighting" Ilana Jacqueline has captivates her curious followers with tips on navigating a hostile medical system. Unfortunately, her lessons are often things she's learned the hard way. Medical gasli…
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In this episode of On AIRR, Dr. Bjoern Peters, Professor at the La Jolla Institute for Immunology (LJI), explores how high-quality data serves as the foundation for advancing AI-based immunological predictions and diagnostics. Originally from Germany, Dr. Peters began his academic journey in theoretical physics at Hamburg, focusing on quantum optic…
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Immune Booster #10 HIV in the brain with Amanda Brown March 18, 2025 From the The Society for Leukocyte Biology 2024 conference at Michigan State University, Cindy and Brianne sit down with Amanda Brown from Johns Hopkins School of Medicine to talk about her career and the research of her laboratory on mechanisms of neuroinflammation in disease, es…
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Transcript: https://primaryimmune.org/sites/default/files/Cx20%201.1%20transcript.pdf.Immune Deficiency Foundation volunteers Riley and Nick discuss the complications and strategies that helped them transition from pediatric to adult care for their chronic illnesses.The information, terminology, and opinions presented in this forum do not necessari…
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