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!

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

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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 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.

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

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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 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.

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

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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, 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

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

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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/

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

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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).

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

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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.

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

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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.

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

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