Untangling PANDAS & PANS: Conversations about Infection-Associated, Immune-Mediated Neuropsychiatric Disorders

S3 E23: Jadin O'Brien Overcomes PANDAS to Excel in Track & Field and Compete on the USA Olympic Bobsled Team

Sun, 29 Mar 2026 22:00:00 -0400

Jaden O’Brien takes us inside the world of Olympic bobsled racing, beginning with the grind of multi-event track at Notre Dame to a three-week bobsled tryout in Lake Placid that turned into a World Cup spot and a ticket to the 2026 Winter Olympics with Team USA.

We talk through the unglamorous parts: learning an unnatural push technique, handling pressure when one race can decide your entire season, and recovering from a violent crash that left her bruised, cut, and questioning whether racing again was smart. Jaden also shares what the Olympics actually feel like, the village setup outside Cortina, the opening and closing ceremonies, trading pins with athletes from around the globe, and the heartbreak of how a small early missstep can drop a team down the standings before you have time to breathe.

Then the conversation shifts to the story that shaped her long before bobsled. Jaden describes living with PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections), including sudden intrusive thoughts, intense obsessions and compulsions, fear-driven rituals, and feeling mentally “blocked” from basic daily tasks. We unpack how families can miss the immune-triggered pattern, what helped her find a path back, and why mental health support, including sports psychology, can be a strength rather than a stigma.

Following my interview with Jadin, I had the honor of speaking with her mother, Leslie O'Brien, about witnessing Jadin's struggles with PANDAS and finding treatment for this horrific condition.

If you’re searching for real-world insight on PANDAS, PANS, infection-triggered OCD, and resilience after neuroimmune illness, this one will stay with you.

Subscribe for more conversations on PANDAS and PANS, share this with someone who needs hope, and leave a review so more families can find these stories. What part of Jaden’s journey hit you the hardest?

Disclaimer: The views and opinions expressed in this program are those of the speakers and do not necessarily reflect the views or positions of any entities they represent.

Credits: Music by Kingsley Durant from his "Convertible" album

To learn more about PANDAS and PANS and The Alex Manfull Fund, visit our website: TheAlexManfullFund.org

Follow us on:
Facebook
Instagram
LinkedIn

S3 E22: Dr. Omar Morales Talks About His Path to LymeMexico

Sun, 22 Feb 2026 21:00:00 -0500

A sudden storm of obsessions, tics, rage, and cognitive chaos can follow a simple infection—and families are left searching for answers. We sit down with Dr. Omar Morales, a hematology‑trained clinician innovating at the intersection of infections and immune engineering, to unpack how blood-based therapies can change the trajectory of Lyme and PANDAS/PANS.

Dr. Morales explains why he treats the biology rather than the label, then breaks down the roles of apheresis modalities. Red cell exchange rapidly dilutes Babesia lodged in red blood cells. Plasmapheresis removes inflammatory plasma, autoantibodies, and toxins that hammer the brain. Photopheresis, supercharged with photosensitizers, both weakens pathogens and reshapes immune signaling. From those sessions, his lab matures dendritic cells that “teach” T and B cells to target the right invaders—an immune reboot especially useful for Bartonella and persistent viral loads.

We explore a practical sequence for severe PANS: “clean the house” with plasmapheresis, then add IVIG, and repeat as needed while targeting infections in parallel. Morales details how environmental disruptors—mold, heavy metals, chemicals, and STDs—can trigger relapse, why diet and microbiome rebuilding matter, and how barrier repair for the gut and blood–brain barrier reduces neuroinflammation. He shares neuroregenerative strategies, from peptides to neural‑derived exosomes, to help brains recover from years of inflammatory wear and tear.

What emerges is a playbook for complex, immune‑mediated neuropsychiatric illness that blends hematology, microbiology, and patient‑centered pragmatism. You’ll hear a remarkable case rescued by red cell exchange, the logic behind choosing each modality, and the call for tighter collaboration between clinicians and scientists to speed innovation. Subscribe, share with someone who needs this, and leave a review to help more families find these tools.

Link reference in the interview: https://youtu.be/oNI52TIFEGA?si=XLnAzSXWoPAuSKIG

S3 E21: My Eclectic Conversation with Fulvio D'Acquisto, PhD: From Carl Rogers to Immuno-Moodulin

Sun, 25 Jan 2026 17:00:00 -0500

What if sudden OCD, tics, and food restriction after an infection aren’t “all in the head,” but start with immune cells carrying a biochemical message to the brain? We sit down with Dr. Fulvio d'Acquisto—immunologist, psychotherapist, and founder of affective immunology—to trace the language between emotions, living conditions, and the immune system, and why that conversation can erupt into neuropsychiatric symptoms in PANDAS and PANS.

Fulvio introduces Immuno-moodulin (iMood), a small protein produced by T cells, found in higher levels in people with OCD and elevated in PANDAS/PANS. He explains how iMood behaves like an intrinsically disordered protein: it can cluster in blood, cross into the brain, and temporarily disrupt neural communication—then disassemble as triggers fade. That dynamic process mirrors real life: flares during infections, relief during remission, and stubborn persistence in complex cases. We unpack why peripheral therapies—antibiotics, IVIG, and plasmapheresis—can reshape central symptoms, and why response varies based on disease staging rather than a one-size-fits-all pathway.

We also explore the bigger map: proteomics that can distinguish PANDAS from controls with striking accuracy, autoimmune conditions that cluster with specific psychiatric diagnoses, and a cautionary tale where “schizophrenia” resolved after immune therapy revealed underlying lupus. Along the way, Fulvio reframes inflammation as a repair system gone repetitive, not an enemy to be extinguished at all costs. And beyond the lab, we talk belonging—how shared meals, genuine dialogue, and community aren’t soft add-ons but active inputs that steady immunity and help people reclaim identity, empathy, and meaning.

If you’re curious about immune-brain crosstalk, novel protein targets, and why conversation can be medicine, this deep dive offers science you can hold and stories you’ll remember. Subscribe, share with someone who needs hope, and leave a review to help more families and clinicians find this work.

S2 E20: The Alex Manfull Fund Reflects on the Past and Looks to the Future

Sun, 04 Jan 2026 19:00:00 -0500

The Manfulls open up about losing their daughter, Alex, to complications of PANDAS/PANS—and how that loss became a focused mission to change the way medicine recognizes and treats infection‑triggered neuroimmune disorders. From kitchen‑table grief to national and global collaborations, they map the work that turns confusion into clarity and hope into measurable progress. The Alex Manfull Fund (TAMF) is born.

Susan walks through the three pillars that guide TAMF's strategy. Awareness comes alive through 36 Hours in DC, where a standing‑room dinner, a 5K, Hill outreach, and a researcher brunch connect families, clinicians, and scientists. Education and dialogue comprise the centerpiece in the TAMF international symposium in Portsmouth, NH. Championing medical rule‑outs when psychiatric symptoms strike and citing Dartmouth’s Neuroimmune Psychiatric Disorders Program as a model for immune‑informed psychiatry. Research takes center stage with proteomics that distinguish PANDAS sera from healthy controls, promising a practical biomarker, and with studies exploring the IL‑17/IL‑23 pathway’s role in blood‑brain barrier permeability, OCD, psoriasis, and psoriatic arthritis. They also preview new projects on Lyme interactions at the BBB, tonsils and adenoids as microbial reservoirs, and microbiome signals that may shape onset and flares.

Advocacy binds it all together. Susan details TAMF's response to the AAP report that they believe sidelines key literature and harms access to care, and she shares that PANDAS/PANS is advancing toward being eligible within the DoD’s PRMRP—opening a vital funding stream. With NIH cuts stalling trials and lab work, they explain why seed and bridge funding from donors keeps critical studies moving forward so those findings can scale when federal support returns. Along the way, they celebrate young leaders joining their board and a growing, global network committed to faster diagnosis, better treatment, and fewer years lost.

Be part of the momentum. Subscribe and share this episode with someone who needs clarity on PANDAS/PANS. Your voice and support move research forward and bring families closer to answers.

S2 E19: Rheumatic Clues To Understanding the PANDAS/PANS Puzzle -- A Conversation with Dr. J. Patrick Whelan

Sun, 26 Oct 2025 12:00:00 -0400

A sore throat that ends in compulsions, tics, and a child who suddenly can’t sleep or attend school sounds improbable—until you hear a pediatric rheumatologist walk through the biology. Dr. J. Patrick Whelan of UCLA sits down with Dr. Susan Manfull, Executive Director of The Alex Manfull Fund, to unpack how infections and the immune system can collide with brain function, producing abrupt-onset OCD, motor and vocal tics, restricted eating, and anxiety that look psychiatric but respond to immunomodulatory treatments. Drawing from a variety of sources, including the history of rheumatic fever, the Lancefield classification of streptococci, and modern cases of Multisystem Inflammatory Syndrome in Children (MIS-C). Dr. Whelan explains why PANDAS and PANS challenge old categories and demand a broader clinical lens.

We dive into innate versus adaptive immunity, what “autoinflammatory” and “autoimmune” really mean, and why so many affected kids also show signs of immunodeficiency. If routine tests like ASO and anti–DNase B come back normal, does that rule out strep’s role? Not necessarily. Whelan shares how expanded antibody panels, trial responses to antibiotics or anti-inflammatories, and careful history-taking can reveal an immune trigger that standard workups miss. He also outlines the practical steps that matter right now: restore sleep, get moving, stabilize nutrition, and build companionship—simple interventions that reduce pain amplification and calm a dysregulated nervous system. Finally, we talk about why “listening to the patient” often illuminates key clues to understanding the case.

If you care about pediatric mental health, infection-associated neuroimmune disorders, or how medicine evolves when data and curiosity meet, you’ll find both science and solace here.

If this resonates, follow the show, share with someone who needs it, and leave a review to help more families and clinicians find these insights.

S2 E18: My Conversation with Dr. Mikki Tal about How She Is Revolutionizing Our Understanding of Infection-Associated Chronic Illness

Sun, 28 Sep 2025 19:00:00 -0400

What makes some people vulnerable to devastating chronic illness after infections that most recover from easily? Dr. Michal "Mikki" Tal, pioneering immunoengineer at MIT, is tackling this question through her groundbreaking Maestro study - the largest clinical research project currently underway at the prestigious institution.

Personal tragedy fuels Dr. Tal's scientific mission. After losing both an uncle to HIV/AIDS and a cousin to meningococcal meningitis, she developed a profound respect for infectious diseases and determination to understand immune system dysfunction. Now, her research examines why infection-associated chronic illnesses like Long COVID and chronic Lyme disease disproportionately affect women, what biological mechanisms prevent recovery, and how we might predict who's at risk.

The conversation explores fascinating biological concepts, including how our immune cells recognize "eat me" versus "don't eat me" signals, and how some pathogens have evolved to manipulate these systems. Dr. Tal introduces her powerful metaphor: "If you took a bacterial road to Rome or a viral road to Rome, once you're in Rome, does it matter anymore how you got there?" This question frames her approach to understanding whether treatment should focus on the triggering infection or the resulting immune dysfunction.

Dr. Tal advocates for a revolutionary "systems medicine" approach that bridges traditional medical specialties to address complex conditions. Her research employs cutting-edge techniques to objectively measure everything from blood vessel appearance to cognitive function, seeking patterns that might predict or explain chronic illness development. Most exciting are the preliminary findings showing significant cognitive impacts, particularly in reaction time, that could immediately inform clinical care.

The Maestro study continues seeking participants, particularly those newly diagnosed with Lyme disease. By examining genetics, microbiome, immune responses, and countless other variables simultaneously, Dr. Tal hopes to finally unlock the mystery of why some people can't bounce back from infections - and how we might help them recover. If you've recently been diagnosed with Lyme disease, consider participating in this groundbreaking research that could change medicine's understanding of chronic illness forever.

S2 E17: Sheilah Gauch Offers Eight Tips for Students with PANS and their Parents on How to Successfully Transition to College...or Anywhere Else

Sun, 31 Aug 2025 12:00:00 -0400

Transitioning to college marks a significant milestone for any young adult, but for those with PANS/PANDAS, this journey demands unique preparation and understanding. In this illuminating conversation, Dr. Susan Manfull welcomes Sheila Gauch, Principal and Clinical Director of Dearborn Academy, who brings both professional expertise and profound personal experience to the table.

Gauch, whose own college experience as an all-American swimmer was derailed by what she believes now was undiagnosed PANS symptoms, shares eight critical strategies each—for parents and for students—that transform the college transition from daunting to doable. Her guidance stems from both professional wisdom and her journey supporting two college-age children with PANS.

For parents, the process begins with helping their children truly understand their condition's immune-mediated nature, recognizing how different it is from primary psychiatric disorders. This knowledge becomes crucial when students need to advocate for themselves in college health centers where PANS/PANDAS awareness may be limited. Equally important is parents understanding their own stress responses, often shaped by years of hypervigilance and advocacy.

"I think caregiver stress and trauma, particularly with PANS families, is so ingrained," Gauch explains, comparing it to "a frog in a pot of boiling water—you don't realize you're boiling alive." Learning to manage this response becomes essential when letting children navigate college independently.

For students, success hinges on understanding how stress triggers inflammation, potentially causing symptom flares. They must become attuned to their bodies, practice effective coping strategies, and embrace self-advocacy—particularly when accessing disability support services. Perhaps most challenging is learning to accept imperfection and mistakes, especially difficult for those with perfectionistic OCD tendencies.

Gauch also introduces the Everest Program, a comprehensive coaching service helping students bridge the gap between high school structure and collegiate independence through academic, clinical, and transition support.

Whether you're a parent preparing to launch your child or a student planning your college journey, this episode offers practical wisdom for navigating this significant transition while managing PANS/PANDAS. Ready to build that bridge to college success? Listen now and discover how to transform challenges into stepping stones toward independence.

S2 E16: Dr. Andrew Baumel: One Pediatrician's Journey to Include Mild Cases of PANDAS/PANS into his Everyday Practice

Sun, 27 Jul 2025 19:00:00 -0400

Dr. Andrew Baumel's story reveals how curiosity, compassion, and clinical observation can lead to breakthrough care for children suffering from immune-mediated neuropsychiatric disorders.

After 18 years as a traditional pediatrician, Dr. Baumel's professional trajectory changed dramatically when a parent asked if he knew anything about PANDAS. Though initially somewhat skeptical, attending an educational lecture with the parent in 2014 convinced him this was a genuine medical condition affecting children's brains following infections. Fast forward, he has now treated over 300 patients with mild to moderate cases of PANDAS and PANS using straightforward medical approaches in his regular pediatric practice.

Dr. Baumel shares fascinating clinical insights, including his identification of "protopans" – early, limited symptoms following infections that, when treated promptly, appears to prevent progression to full-blown disorders.

"I have a regular practice of 1500 kids, ages 0 to 23 years. I just incorporate these [mild cases of] PANS/PANDAS into my regular practice as my regular patients. This is doable," Dr Baumel said.

Dr. Baumel offers thoughtful perspective on why acceptance of PANDAS/PANS has been slow, drawing parallels to historical medical discoveries that initially faced skepticism before becoming standard practice.

Link to video of 2014 PANDAS Doctor's Breakfast that Dr. Baumel mentioned in this podcast: https://aspire.care/videos/qa-breakfast-for-doctors-featuring-national-pans-pandas-expert-panel-nepans-2014/ (Aspire website)

S2 E15: Science Under Siege: A conversation with Dr. Uğur Akcan and Dr. Dritan Agalliu about PANDAS Research, NIH Cuts, and the Power of Community

Sun, 29 Jun 2025 22:00:00 -0400

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. Akcan shares his research path from studying complement levels in patients with bipolar disorder to pioneering work on the blood-brain barrier, ultimately contributing to groundbreaking discoveries about PANDAS and PANS in the Agalliu Lab at Columbia University. With remarkable clarity, he explains how mutations in the RxRA gene may explain why only some children develop these disorders after streptococcal infections, and how microglia—the brain's immune cells—fail to properly regulate neuroinflammation when this gene is compromised.

The discussion takes an unexpected turn as we learn how Dr. Akcan's vital research was nearly derailed in March 2025 by sudden NIH funding cuts directed by the Trump administration at Columbia. In a dramatic development, the PANDAS/PANS community rallied to save his position through a GoFundMe campaign, demonstrating the powerful connection between affected families and researchers working to solve this medical mystery.

Beyond the scientific discoveries, Dr. Akcan's personal story reflects the qualities that drive medical breakthroughs: curiosity about why peripheral infections trigger brain symptoms, perseverance through research challenges, and passion for helping those affected by these devastating disorders. His development of a 3D blood-brain barrier model and investigations into Th17 cells represent frontier science with real-world implications for treatment.

When Dr. Akcan is not in the lab, you may find him watching football, rooting for his favorite team, Galatasaray, or spending time with his wife and young child.

Dr. Agalliu also joins me to discuss how the NIH funding cuts have affected his lab.

Support Dr. Akcan's crucial PANDAS/PANS research by visiting this GoFundMe page and join the community working to unravel PANDAS and PANS. Your contribution could help transform our understanding of how infections trigger neuropsychiatric symptoms and lead to better treatments for children, adolescents, and young adults suffering from these disorders. Both researchers express deep gratitude to supporters of this work.

The goal is to raise $100,000 to cover Dr Akcan's annual salary and benefits -- only $15, 602 left!

S2 E14: When Everything Changes: Jen's Journey with PANS/PANDAS and the Fight to Be Believed

Sun, 01 Jun 2025 16:00:00 -0400

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 shares a deeply personal account of navigating a fragmented medical system while battling PANS/PANDAS and related autoimmune conditions.

Jen recounts her long history of strep infections, early signs of neurological distress, misdiagnoses, and the profound impact of being dismissed by the medical community. She opens up about the moment she was finally heard, the diagnosis that changed everything, and her journey toward recovery with IVIG treatment. Now in graduate school and reclaiming her life, Jen offers hope, insight, and advice to others walking a similar path.

S2 E13: Understanding the Role of a Psychologist in PANDAS and PANS: A Conversation with Dr. Sarah O'Dor

Sun, 27 Apr 2025 08:00:00 -0400

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 Neuropsychiatric Disorder Associated with Streptococcal Infection) and PANS (Pediatric Acute-onset Neuropsychiatric Syndrome), conditions where infections trigger obsessive-compulsive behaviors, tics, restricted eating, and a host of other psychiatric, cognitive, emotional, somatic, and medical symptoms. Through the compelling case of "Ms. K," a six-year-old who developed severe handwashing compulsions following a strep infection, Dr. O'Dor demonstrates how these conditions often go misdiagnosed as traditional psychiatric disorders.

The conversation explores the critical role psychologists can play in recognizing these disorders and providing effective treatment. Dr. O'Dor describes how cognitive-behavioral therapy can be adapted for these patients, how families are affected by sudden behavioral changes in their children, and how psychologists can support not just the child but the entire family system. Also very importantly, she emphasizes the need for collaboration between mental health professionals and medical specialists—a multidisciplinary approach reflecting the complex nature of these disorders.

For parents, clinicians, and anyone interested in the fascinating intersection between immunology and mental health, this episode offers a roadmap to better understanding, earlier diagnosis, and more effective treatment. The discussion culminates with reflections on a growing paradigm shift in psychiatry—one that increasingly recognizes the role immune function plays in mental health.

Whether you're a healthcare provider, a parent concerned about your child's sudden behavioral changes, or simply curious about emerging understandings of brain-immune connections, this episode will transform how you think about certain psychiatric symptoms.

To read the article reference in the podcast, click here.

S2 E12: The Neuropathology of PANDAS/PANS: Dr. Brent Harris Talks about the POND Brain Bank

Sun, 30 Mar 2025 21:00:00 -0400

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, established the POND Brain Bank for brains and brain tissue from individuals who had been diagnosed with "PANDAS/PANS and Other Neuroimmune Disorders." Dr. Harris talks about neuropathology, the role of brain banks in facilitating research on brain disorders, and findings from the first published clinicopathologic case report of a young adult diagnosed with PANDAS. He explains how gliosis, a marker of brain injury found in that case, can occur after a neurological insult and how it might be reversible in some cases; it is not a condition expected to be observed in healthy 26-year-old individuals. Additionally, he emphasizes the importance of more research and better recognition of conditions like PANDAS/PANS in the medical community to improve diagnosis and treatment. The episode touches on the evolving understanding of these diseases and the critical role of clinical research and education.

The POND Brain Bank at Georgetown University

https://neurology.georgetown.edu/patientcare/pond-brain-bank/

Clinicopathologic Characteristics of PANDAS in a Young Adult: A Case Report

https://karger.com/dne/article/45/6/335/862829/Clinicopathologic-Characteristics-of-PANDAS-in-a

S2 E11: Physician-Scientist Herb Lachman, MD, Talks about Recent Genetic Observations in PANS: DNA Damage Response Genes

Sun, 23 Feb 2025 12:00:00 -0500

Dr Herb Lachman is a physician, behavioral geneticist, and professor at the Albert Einstein College of Medicine in New York City. In his 44 years on the faculty, he has studied the molecular basis of schizophrenia, autism, and the broad category of neurodevelopmental disorders. More recently, a serendipitous inquiry about a major DNA Damage Response Gene, PPMD1, prompted Dr. Lachman to shift his focus to PANS (Pediatric Acute-Onset Neuropsychiatric Syndrome).

In the 11th episode of “Untangling PANDAS and PANS,” we discuss some basic information about genetics so that laypersons with an interest in this subject are able to assimilate his findings about DNA damage repair genes and their potentially significant role in neuropsychiatric conditions. These genes not only underscore the complexity of PANS and PANDAS but also point to the multifaceted interplay between genetics and the immune system at the intersection of the brain.

Genes are surely Dr. Lachman’s muse. He is quick to acknowledge that his sample sizes are small and biased, but they are nonetheless generating hypotheses to study more fully with larger data sets.

The simple question of why, given the ubiquity of Group A Strep, does only a small subset of patients develop PANDAS? Genetic mutations will very likely help to provide answers in the future.

To learn more about Dr. Herb Lachman's recent genetics findings on PANS, please refer to these two articles:

https://karger.com/dne/article/doi/10.1159/000541908/914745/Ultrarare-Variants-in-DNA-Damage-Repair-Genes-in

https://pubmed.ncbi.nlm.nih.gov/35773312/

S2 E10: Dr. Juliette Madan Explains the Importance of Epidemiological Research on PANDAS & PANS

Sun, 26 Jan 2025 12:00:00 -0500

Juliette C. Madan, MD, MS wears many hats. Dr. Madan is an Associate Professor of Pediatrics, Psychiatry, Epidemiology, and Quantitative Biomedical Data Science at Geisel School of Medicine at Dartmouth. She is the Clinical Director of the Children’s Environmental Health and Disease Prevention Research Center within Geisel and Dartmouth Hitchcock Medical Center. She is widely recognized for her research in understanding the intestinal microbiome’s role in health and disease and in interventions such as nutritional, probiotic regimens, and fecal matter transplant.

My relationship with Dr. Madan grew out of her role as co-founder of the Psychiatry Immunology and Neurology Group (known as PING) which is now named the Neuroimmune Psychiatric Disorders (NIPD) Clinic, one of only a handful of clinics in the nation devoted to treating PANDAS and PANS in children and adults. That was founded in 2019. Today, she and Dr. Richard Morse, a neurologist with whom she founded PING, are the co-chairs of The Alex Manfull Fund Scientific and Medical Advisory Board

I could have talked to Dr Madan about a multitude of subjects but, for this interview I asked her to wear her Epidemiology hat. (She promised to return to discuss other areas).

Current estimates of the incidence of PANDAS/PANS varies widely from 1 in 46,000 to as high as 1 in 200. The latter figure is bandied around but it is not based on research, epidemiological or otherwise. Dr Madan discusses her own recent (2023) research with Dr. Ellen Wald, a highly respected pediatric infectious disease physician, and others on the prevalence of PANDAS and PANS. Because there were many limitations in that study, she and Dr. Wald are about to conduct an (NIH-supported) epidemiological study to answer the prevalence question using a different methodology,

Dr Madan is a graduate of Brown University School of Medicine, after which she completed a fellowship program in neonatal-perinatal medicine at Tufts University and while at Tufts, completed a master's degree in clinical and translational research.

When Dr. Madan is not in her clinic or her lab, look for her on the Connecticut River as she is a passionate rower. She also manages to find time with her ducks and chickens!

NOTE: My conversation with Dr. Madan was recorded prior to the December 16, 2024 release of the preliminary clinical report on PANS by The American Academy of Pediatrics (AAP).

S1 E9: Dr. Warris Bokhari Vows to Make Healthcare Equitable One Unjust Insurance Denial at a Time

Sun, 29 Dec 2024 09:00:00 -0500

Dr. Warris Bokhari, CEO and co-founder of the insurance appeals platform Claimable, discusses how the product is helping patients with PANDAS and PANS diagnoses fight denied healthcare claims. He explains the process of using Claimable to submit comprehensive appeals that cite medical research and leverage State laws, resulting in an 85% success rate on average. Dr. Mark Pasternack, Chief of Pediatric Infectious Disease at Boston's Massachusetts General Hospital, shares his experiences about the challenges of getting IVIG treatments approved for his patients, highlighting a need for a solution like Claimable. The discussion cover the impact of healthcare denials on patients and families, as well as the role that advocacy and media attention can play in driving change in the insurance industry.

In addition to PANDAS and PANS, Claimable serves adult rheumatology, inflammatory bowel disease (ulcerative colitis and crohn's), and migraine. Appeal services for PANDAS and PANS patients are currently free. To learn about Claimable, please visit GetClaimable.com.

S1 E8: Dr. Pawel Kiela Discusses the Gut Microbiome, Microglia, and PANDAS

Sun, 24 Nov 2024 00:00:00 -0500

Pawel Kiela, DVM, PhD currently holds the rank of Professor and has a PANDA endowed chair in Autoimmune Disease Research in the Department of Pediatrics at the University of Arizona Medical School in Tucson. Dr. Kiela is an integral part of the Steele Children’s Research Center which has four integrated branches: basic science, clinical research, clinical care, and teaching to address a range of neuropsychiatric disorders such as PANS, PANDAS, and Sydenham’s Chorea. He is a lead scientist in two Centers of Excellence: Children’s Post-Infectious Autoimmune Encephalopathy and the Daniel Cracciolo Institute for Pediatric Disease Research and the Associate Director of Pediatric Gastroenterology Fellowship Program.

Dr. Kiela received his DVM from the Warsaw University of Life Science in Poland and his PhD from the same University and Lund University in Sweden in the developmental physiology of the gastrointestinal tract. His primary research interest is autoimmune and autoinflammatory diseases, especially Crohn’s disease, ulcerative colitis, gut microbiota, mucosal immunology, and extraintestinal manifestations of intestinal inflammation. I am very happy to say that Dr. Kiela, in recent years, has brought his in-depth understanding of the aforementioned research areas into the study of PANDAS and PANS. (What good fortune for the PANDAS/PANS community.)

When Dr. Kiela isn’t in his lab, you may find him working on his 1962 Airstream travel trailer, a challenging endeavor, he explained as he is essentially bringing his beloved Airstream back to life. This hands-on work keeps his sanity, he joked: “In contrast to the lab work, there are many more opportunities for immediate rewards.”

Note: Dr Kiela’s endowed chair has the remarkably coincidental acronym, PANDA, however, in this case stands for “People Acting Now Discover Answers” and is a gift from the Phoenix Women’s Board of the Steele Children’s Research Center.

S1 E7: Dr. Tim Ubhi Talks about Treating PANDAS/PANS in the UK at his new London PANS Clinic

Sun, 29 Sep 2024 15:00:00 -0400

Susan Manfull, PhD crossed the pond to speak with Dr. Tim Ubhi, consultant paediatrician and fellow of the United Kingdom’s Royal College of Paediatrics and Child Health. Dr. Tim, as his patients call him, has dedicated his life to children’s health, beginning with conducting research on using botulinum toxin to help children with cerebral palsy, work for which he was awarded the prestigious Michael Blacow prize by the Royal College of Paediatrics and Child Health to, currently, focusing on treating children with PANDAS, work that has earned him the deepest gratitude from his over 1200 patients and their families.

Dr. Ubhi is the founder of the newly established London PANS Clinic and of the Children’s e-hospital in 2013. He is also a founding member of the UK PANS/PANDAS Physicians Network and is also a member of the Scientific and Medical Advisory Board of the European Immunopsychiatry Association (EXPAND).

Dr Ubhi talks about what drew him to pediatrics and to PANDAS and PANS, in particular. The conversation veers into some interesting history underscoring how the slow speed with which medicine changes has affected the recognition and treatment of PANDAS and PANS. And yet, he has plowed forward and opened a clinic in London and has plans to train physicians in this field in the northeast of England, collaborate with practitioners outside of the UK, and conduct research using, for example, innovative techniques such pupillometry. And more -- Dr. Ubhi is clearly making extraordinary advances in the UK.

Highly respected in his chosen field in the UK and well beyond, he is in demand to speak at conferences, including by The Alex Manfull Fund Symposium on Neuroimmune Psychiatric Disorders where he will join the Clinical Panel to address questions from physicians and other practitioners about treating persons diagnosed with PANDAS and PANS to be held on November 2, 2024 in Portsmouth, New Hampshire. (For more information, please visit: https://thealexmanfullfund.org/tamf-2024-symposium/ .)

S1 E6: The Story Behind AB2105, California's Bill to Require Insurance Coverage for PANDAS/PANS Treatment

Sun, 25 Aug 2024 13:00:00 -0400

In this episode of Untangling PANDAS & PANS, Susan Manfull, PhD talks with April Ronay, founder of California Coalition for PANS/PANDAS (aka, Cal-Coalition), and Shari Strulson, one of the founding members of Cal-Coalition. Both are teachers, by profession, both have a family member with PANS, and both are tirelessly working to pass legislation in California to require insurance companies to provide coverage for doctor-prescribed treatments for PANDAS and PANS. They are currently working to pass AB2105, a bill sponsored by Assembly member Josh Lowenthal.

April is a second-grade teacher from Long Beach, California. Shari is a former fourth-grade and enrichment teacher in Bridgeport, Connecticut who currently resides in Redondo Beach, California.

The PANDAS/PANS community is a remarkably close community. Comprised of patients, family members, advocates, policy makers, researchers, and practitioners, this hybrid virtual and in-person community extends across the United States and into many other countries around the world. PANDAS/PANS can be such an excruciatingly debilitating disorder that supportive relationships are easily engendered among care-takers whose care-burden demands often exceed those of Alzheimer’s disease. Many wear multiple hats. Untangling PANDAS & PANS cover all members of this intertwined community.

What drives April and Shari -- who wear parent and advocate hats -- to take on the huge task of passing legislation for the benefit of all?

Hear their stories on this podcast episode. Meet them (and many other families and advocates) on Advocacy Day in Long Beach, California on September 14, 2024 (9:00 a.m. to 12:00 p.m.).

Eventbrite Advocacy Day Agenda:
https://bit.ly/PANS_PANDAS_Advocacy_Day

To send a letter of support to Governor Gavin Newsom (once the bill is on his desk), go to https://www.gov.ca.gov/contact/ for online submission or mail to

Governor Gavin Newsom
1021 O Street, Suite 9000
Sacramento, CA 95814

For more information about Cal-Coalition, visit www.calcoalition.com and follow on Facebook@CalCoalition-for-PansPandas-Advocacy (other social media handles on website).

S1 E5: Earl Harley, MD Talks About How Otolaryngologists Can Assist in the Treatment of PANDAS

Sun, 28 Jul 2024 17:00:00 -0400

Earl Harley, MD, FACS, FAAPS is a highly regarded pediatric otolaryngologist (Ears, Nose, and Throat doctor or ENT) at Georgetown University Medical Center and a beloved assistant professor at the Medical School. Dr. Harley is widely respected for his expertise in working with patients who have been diagnosed with PANDAS and PANS. Families travel from across the country (and well beyond) for consultations regarding adenotonsillectomies for their children suffering from these neuroimmune psychiatric disorders.

Dr Harley received his medical degree from Howard University School of Medicine in Washington, DC. He completed an internship at Walter Reed Hospital (previously named National Naval Medical Center). He did his residency in otolaryngology at Oakland Naval Hospital in California and, later, two pediatric ENT fellowships: Children’s National Medical Center and George Washington University in DC and the Massachusetts Eye and Ear Infirmary and Harvard University in Boston, Massachusetts.

At the same time, Dr Harley pursued a remarkable career of over 20 years in the U.S. Navy in various hospitals and on ships. He attributes his career as an ENT to the Navy and his work as a flight surgeon.

Susan Manfull, PhD caught up with Dr Harley just as he emerged from surgery — he had just performed a adenotonsillectomy with a patient diagnosed with PANDAS. Learn about his distinguished career spanning over 50 years and about how he came to know about PANDAS and PANS.

S1 E4: Beth Latimer, MD Discusses How the Understanding of PANDAS has Progressed: It is Not Solely a Pediatric Disorder

Sun, 30 Jun 2024 10:00:00 -0400

M. Elizabeth “Beth” Latimer, MD is a pioneer in the field of autoimmune encephalitis and is known across the country and in Europe for her expertise in treating PANDAS and PANS. She received her medical degree from Tufts University School of Medicine in Boston, Massachusetts. She completed her residencies in Pediatrics and Neurology at Walter Reed Army Medical Center in Washington, DC with special certification in Child Neurology. She served as chief of the Child Neurology Division at Georgetown University Hospital in Washington, DC for five years, prior to practicing at Fairfax Hospital in Virginia, and then to opening her own practice in Child and Adolescent Neurology in 2000 in Bethesda, Maryland. Currently, Dr. Latimer’s private practice is in Washington, DC, in general neurology with a specialization in caring for patients with PANDAS and PANS.

Dr. Latimer is one of the few physicians in this field who has long worked with adult patients, recognizing that post-pubescent individuals could continue to suffer from PANDAS/PANS and that onset could first manifest after puberty.

Susan Manfull, PhD sits down with Dr. Latimer over cheese and crackers and sparkling water on a hot afternoon on Cape Cod. They discuss Dr. Latimer’s career in pediatric neurology, highly respected work that has spanned nearly forty years dedicated to treating patients in a field that still struggles to find a name. Whatever the field be called, Dr. Latimer’s name will certainly have a place in its history and in the hearts of many families.

S1 E3 Part 1: Dr. Shannon Delaney Talks About What Do Tick-Borne Diseases Have to Do with PANS?

Sun, 26 May 2024 00:00:00 -0400

Dr. Shannon Delaney, a psychiatrist with expertise in PANDAS/PANS, Lyme, and other vector-borne diseases, talks with Susan Manfull about how these complex disorders present in children and adults. Much of what she came to learn about Lyme came from her work with Dr. Brian Fallon at Columbia University.

After her residency at Harvard Longwood Psychiatry Residency Program, she moved to New York-Presbyterian/Weill Cornell Medical Center and Presbyterian/Columbia University Irving Medical Center and, eventually, rose to become the Director of Child and Adolescent Evaluation at the Lyme and Tick-Borne Disease Research Center at Columbia University. Currently, Dr. Delaney has a private practice in New York City.

Dr. Delaney's work falls into the relatively new and emerging field of immunopsychiatry in which psychiatric disorders are viewed through a lens that examines the role of infections and the immune system in the development of neuropsychiatric symptoms.
Learn what initial professional experiences led Dr. Delaney to become what might be described as a "medical detective."

Episode 3 is divided into three parts: 1) Introduction and overview of tick-borne diseases; 2) diagnosis and treatment; and 3) a description of her soon-to-be-released study about the prevalence of Bartonella in patients diagnosed with Bartonella.

Recorded May 13, 2024

S1 E3 Part 2: Dr. Shannon Delaney Talks About What Do Tick-Borne Diseases Have to Do with PANS?

Sun, 26 May 2024 00:00:00 -0400

In Part 2, the discussion with Dr. Shannon Delaney continues with a focus on the diagnosis and treatment of Lyme and other tick-borne diseases.

Recorded May 13, 2024

S1 E3 Part 3: Dr. Shannon Delaney Talks About What Do Tick-Borne Diseases Have to Do with PANS?

Sun, 26 May 2024 00:00:00 -0400

In Part 3, the discussion with Dr. Shannon Delaney continues on her soon-to-be-released study in Frontiers in Psychiatry Journal about the prevalence of Bartonella in patients diagnosed with Bartonella.

Recorded May 13, 2024

S1 E2: The Intersection of Strep, Intractable OCD, Psoriasis, and IL-17: A Conversation with Kyle Williams, MD, PhD and Andrew

Sun, 28 Apr 2024 15:00:00 -0400

In episode two, Susan Manfull interviews Dr. Kyle Williams, Director of the Pediatric Neuropsychiatry and Immunology Program at Massachusetts General Hospital, and Andrew about the potential link between strep, psoriasis, psoriatic arthritis, and obsessive-compulsive disorder (OCD).

Andrew shares his personal experience of how his psoriasis and OCD symptoms improved after being treated with the biologic medication Cosentyx, which targets IL-17, a cytokine involved in inflammation.

Dr. Williams discusses his research to investigate the relationship between IL-17, psoriasis, and OCD, including retrospective and prospective studies. They also discuss the need for a more multidisciplinary approach in medicine to understand better and treat the connections between physical and mental health.

If you have Psoriasis and OCD and would like to share your story with Dr. Kyle Williams, please send an email to drwilliams@drkylewilliams.com.

Recorded April 25, 2024

S1 E2 Bonus: The Intersection of Strep, Intractable OCD, Psoriasis, and IL-17: Continued conversation with Kyle Williams, MD, PhD and Andrew

Sun, 28 Apr 2024 14:00:00 -0400

It seemed our conversation from Episode 2 was left dangling so we continued talking. If you would like to hear a wee bit more, listen to this bonus content which captures most of that conversation, mostly musings about navigating the medical system and whether the division between psychiatry and neurology is artificial (another dangling conversation to be continued in another episode).

S1 E1: Lauren Breithaupt, PhD, Talks About The Immunological Basis of Eating Disorders and PANDAS/PANS

Sat, 06 Apr 2024 19:00:00 -0400

Lauren Breithaupt, PhD, Assistant Professor of Psychiatry, based in the Eating Disorders Clinical and Research Program at Massachusetts General Hospital, will discuss her cutting-edge research about the immunological basis of eating disorders and PANDAS and PANS.

After briefly describing her work on eating disorders, she talks about her new research on PANDAS and PANS. Entitled “Using a Machine Learning Approach to Identify Immune Biomarkers Associated with PANS/PANDAS,” Dr. Breithaupt’s latest work will focus on PANDAS/PANS, OCD, and restrictive eating disorders (R-ED) with the specific goal of identifying a disease specific biomarker for PANDAS/PANS. This would be a huge step forward for this neuroimmune disorder as, currently, there are no such biomarkers.

To carry out this study, Dr. Breithaupt has established what is believed to be the largest protein library of PANS/PANDAS symptoms to date. The library includes proteins expression levels of 476 adolescents diagnosed with the disorders representing overlapping PANS/PANDAS symptoms -- OCD, restrictive-eating disorders -- as well as individuals with PANS/PANDAS and age matched healthy controls. The goal is to identify disease specific biomarkers for each disorder using this very large and comprehensive data set of patients with symptoms indicative of each disorder.

Identifying protein biomarkers is important for diagnosis, the identification of novel targets for drug development, and to further understand the biological underpinnings of these disorders. Very importantly, the results of this proposed study will serve as pilot data for larger NIMH grants.

Dr. Breithaupt’s current research is funded by The Alex Manfull Fund with generous contributions from The Louisa Adelynn Johnson Fund for Complex Disease and Neuroimmune Foundation.

Recorded March 28, 2024

S1 E1 Bonus: PANDAS/PANS Advocacy Day on Capitol Hill - Join us on April 12, 2024

Sat, 06 Apr 2024 18:00:00 -0400

In this bonus episode, I will be talking about our second annual PANS/PANDAS Advocacy Day on Capitol Hill, a joint event planned by the National Alliance of PANS/PANDAS Action (NAPPA) and The Alex Manfull Fund (TAMF) to be held on Friday, April 12th in Washington, DC. My guests -- Amanda Peel Crowley, co-founder of NAPPA, and Paul J. Murphy, Treasurer of The Alex Manfull Fund -- have all the details!
LINK to register: https://thealexmanfullfund.org/advocacy-day-on-capitol-hill-2024/

On Saturday, April 13th, our second annual 5K Run/Walk will take place.
LINK to register: https://thealexmanfullfund.org/the-alex-manfull-fund-2024-5k-run-walk/

BREAKING NEWS: April 8th marks more than (just) solar eclipse!
The Alex Manfull Fund Silent Auction will go live on Monday, April 8th at 12:00 p.m. and will end Sunday, April 14th at 9:00 p.m. with the culmination of the weekend events.
The ECLIPSE serves as a metaphor for the unique and marvelous nature of "36 Hours in DC," a time when patients, advocates, doctors, researchers, scientists, health providers, and legislators come together to advance change on PANDAS/PANS. Where the lives lost will move us all to a place where no life ever again be cut short -- or interrupted -- by infection-associated neuroimmune disorders.

Together, we can ECLIPSE PANDAS/PANS!

Here is the LINK to view the auction items: https://alexmanfullfund.betterworld.org/auctions/going-distance-capitol-hill-poto

Recorded March 29, 2024.