Untangling PANDAS & PANS: Conversations about Infection-Associated, Immune-Mediated Neuropsychiatric Disorders
Hello and welcome to Untangling PANDAS & PANS, a podcast about two relatively unknown medical disorders characterized by the sudden and dramatic onset of obsessions and compulsions, vocal or motor tics, or restricted eating behavior -- and a whole host of other symptoms -- following strep or other bacterial or viral infection. Sometimes overnight. I have the privilege of interviewing some of the top researchers and clinicians in the rapidly growing field of Infection-Associated, Immune-Mediated Neuropsychiatric Disorders. That’s a mouthful of words that encompasses the strangely named disorders, PANDAS and PANS.
My name is Dr. Susan Manfull. I am a social psychologist, the Executive Director of The Alex Manfull Fund, and the mother of Alex Manfull, who died at 26 years old due to PANDAS, a neuropsychiatric disorder my husband and I knew next to nothing about, certainly not that our daughter could die from it.
PANDAS is an acronym for “Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus.” This disorder, first defined in 1998 at the National Institute of Mental Health, describes the acute and dramatic onset of obsessions and compulsions and/or motor or vocal tics as well as a whole host of neuropsychiatric symptoms in temporal association to a Group A streptococcal infection. PANS, which stands for Pediatric Acute-onset Neuropsychiatric Syndrome, refers to a similar symptom presentation -- with obsessions and compulsions or restricted eating being the cardinal symptoms -- due to a broader category of triggers (typically bacterial or viral infections). Both are thought to stem from a dysregulated immune system, probably leading to an over-production of autoantibodies and concomitant excess brain inflammation, particularly in the basal ganglia.
Symptoms vary from person to person and range in severity from mild to severe, and generally have a relapsing and remitting course. With early recognition and correct treatment, these disorders can be successfully treated. Today, it is no longer viewed as a diagnosis limited to the pediatric population.
Please stay tuned after each episode to listen to a one-minute public service announcement about PANDAS & PANS and The Alex Manfull Fund. To learn more, please visit our website: TheAlexManfullFund.org.
This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition.
Untangling PANDAS & PANS: Conversations about Infection-Associated, Immune-Mediated Neuropsychiatric Disorders
S2 E20: The Alex Manfull Fund Reflects on the Past and Looks to the Future
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.
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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