Shows
Untangling PANDAS & PANS: Conversations about Infection-Associated, Immune-Mediated Neuropsychiatric DisordersS2 E13: Understanding the Role of a Psychologist in PANDAS and PANS: A Conversation with Dr. Sarah O'DorIn 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 infe...2025-04-271h 15
Untangling PANDAS & PANS: Conversations about Infection-Associated, Immune-Mediated Neuropsychiatric DisordersS2 E12: The Neuropathology of PANDAS/PANS: Dr. Brent Harris Talks about the POND Brain BankThis 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 c...2025-03-311h 16
Untangling PANDAS & PANS: Conversations about Infection-Associated, Immune-Mediated Neuropsychiatric DisordersS2 E11: Physician-Scientist Herb Lachman, MD, Talks about Recent Genetic Observations in PANS: DNA Damage Response GenesDr 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 assim...2025-02-231h 13
Untangling PANDAS & PANS: Conversations about Infection-Associated, Immune-Mediated Neuropsychiatric DisordersS2 E10: Dr. Juliette Madan Explains the Importance of Epidemiological Research on PANDAS & PANSJuliette 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 Psych...2025-01-2646 minUntangling PANDAS & PANS: Conversations about Infection-Associated, Immune-Mediated Neuropsychiatric DisordersS1 E9: Dr. Warris Bokhari Vows to Make Healthcare Equitable One Unjust Insurance Denial at a TimeDr. 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...2024-12-291h 17Untangling PANDAS & PANS: Conversations about Infection-Associated, Immune-Mediated Neuropsychiatric DisordersS1 E8: Dr. Pawel Kiela Discusses the Gut Microbiome, Microglia, and PANDASPawel 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 th...2024-11-241h 19Untangling PANDAS & PANS: Conversations about Infection-Associated, Immune-Mediated Neuropsychiatric DisordersS1 E7: Dr. Tim Ubhi Talks about Treating PANDAS/PANS in the UK at his new London PANS ClinicSusan 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 famili...2024-09-291h 25Untangling PANDAS & PANS: Conversations about Infection-Associated, Immune-Mediated Neuropsychiatric DisordersS1 E6: The Story Behind AB2105, California's Bill to Require Insurance Coverage for PANDAS/PANS TreatmentIn 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 f...2024-08-2550 minUntangling PANDAS & PANS: Conversations about Infection-Associated, Immune-Mediated Neuropsychiatric DisordersS1 E5: Earl Harley, MD Talks About How Otolaryngologists Can Assist in the Treatment of PANDASEarl 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...2024-07-2844 minUntangling PANDAS & PANS: Conversations about Infection-Associated, Immune-Mediated Neuropsychiatric DisordersS1 E4: Beth Latimer, MD Discusses How the Understanding of PANDAS has Progressed: It is Not Solely a Pediatric DisorderM. 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...2024-06-301h 06Untangling PANDAS & PANS: Conversations about Infection-Associated, Immune-Mediated Neuropsychiatric DisordersS1 E3 Part 3: Dr. Shannon Delaney Talks About What Do Tick-Borne Diseases Have to Do with PANS?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, 2024Disclaimer: 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" albumTo learn more about PANDAS and PANS and The Alex Manfull Fund, visit our website: TheAlexManfullFund.orgFollow us on:Facebook2024-05-2613 minUntangling PANDAS & PANS: Conversations about Infection-Associated, Immune-Mediated Neuropsychiatric DisordersS1 E3 Part 2: Dr. Shannon Delaney Talks About What Do Tick-Borne Diseases Have to Do with PANS?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, 2024Disclaimer: 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" albumTo learn more about PANDAS and PANS and The Alex Manfull Fund, visit our website: TheAlexManfullFund.orgFollow us on:FacebookInstagramLinkedIn2024-05-2629 minUntangling PANDAS & PANS: Conversations about Infection-Associated, Immune-Mediated Neuropsychiatric DisordersS1 E3 Part 1: Dr. Shannon Delaney Talks About What Do Tick-Borne Diseases Have to Do with PANS?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. Curre...2024-05-2656 minUntangling PANDAS & PANS: Conversations about Infection-Associated, Immune-Mediated Neuropsychiatric DisordersS1 E2: The Intersection of Strep, Intractable OCD, Psoriasis, and IL-17: A Conversation with Kyle Williams, MD, PhD and AndrewIn 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...2024-04-281h 06Untangling PANDAS & PANS: Conversations about Infection-Associated, Immune-Mediated Neuropsychiatric DisordersS1 E2 Bonus: The Intersection of Strep, Intractable OCD, Psoriasis, and IL-17: Continued conversation with Kyle Williams, MD, PhD and AndrewIt 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).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 "...2024-04-2815 minUntangling PANDAS & PANS: Conversations about Infection-Associated, Immune-Mediated Neuropsychiatric DisordersS1 E1: Lauren Breithaupt, PhD, Talks About The Immunological Basis of Eating Disorders and PANDAS/PANSLauren 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...2024-04-0750 minUntangling PANDAS & PANS: Conversations about Infection-Associated, Immune-Mediated Neuropsychiatric DisordersS1 E1 Bonus: PANDAS/PANS Advocacy Day on Capitol Hill - Join us on April 12, 2024In 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: htt...2024-04-0742 min
Women in the ArenaEvery parents worst nightmare with Susan Newman ManfullLet's be friends!Susan Newman Manfull is in the position that no parent ever wants to be in. She is grieving the loss of her only child to a disease that many have never heard of. PANDAS is a neurological disorder that is the result of a strep infection, and manifests in the most confusing ways. Today's episode is an opportunity to bring awareness to this little know disease and educate parents on the possible signs of PANDAS. This is the mission of Susan and Bill Manfull, to create an educational and research foundation in the memory and...2022-02-2354 min