Untangling PANDAS & PANS: Conversations about Infection-Associated, Immune-Mediated Neuropsychiatric Disorders
Susan Newman Manfull, PhD
23 episodes
1 week ago
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 immu...
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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 immu...
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 immu...
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 ...
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 undiagnos...
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 affec...
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, ult...
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 h...
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 trigg...
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 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 “Unt...
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 interventio...
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 experi...
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 ...
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, focusin...
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 ...
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 psych...
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 Georget...
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 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: TheAlexMan...
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 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 PA...
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 Irv...
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. Wil...
Untangling PANDAS & PANS: Conversations about Infection-Associated, Immune-Mediated Neuropsychiatric Disorders
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 immu...
