Researchers and advocates gather for PANS and PANDAS summit

By AI, Created 4:46 PM UTC, May 27, 2026, /AGP/ – Experts and advocates will meet June 12-13 outside Washington, D.C., for a 36-hour summit focused on speeding research, diagnosis and treatment for PANS and PANDAS. The Alex Manfull Fund is also tying the event to fundraising, new research grants and Virginia’s move to include the disorders in its essential health benefits plan.

Why it matters: - PANS and PANDAS can trigger sudden neuropsychiatric symptoms in children and young people, including obsessive compulsive behaviors, restrictive eating, tics, anxiety, insomnia and cognitive decline. - Early treatment can lead to a dramatic turnaround for many patients. - Delayed diagnosis and treatment can increase the risk of lasting neurological, psychiatric, cognitive and autoimmune problems. - Virginia’s updated Essential Health Benefits benchmark plan now includes medically necessary care for the disorders, making the state one of the first to do so.

What happened: - The Alex Manfull Fund is convening a 36-hour summit, “36 Hours for PANS and PANDAS Advocacy in Motion,” on June 12-13 outside Washington, D.C. - The event is designed to accelerate research, diagnosis and treatment for infection-associated neuroimmune disorders that affect young people. - A special working session on June 12 will bring together leading practitioners and researchers to share research and build collaboration. - The summit comes from a nonprofit founded in 2018 by William and Susan Manfull after their daughter Alex died from PANDAS.

The details: - PANS and PANDAS are inflammatory brain disorders that can be triggered by common infections and metabolic disturbances. - The immune system attacks the brain, causing brain inflammation and a wide range of disabling physical and mental symptoms. - Treatments mentioned in the release include anti-inflammatories, antibiotics and immune-modulating therapies. - The gathering is expected to include Dr. Jennifer Frankovich, Dr. Herb Lachman, Dr. Beth Latimer, Dr. Juliette Madan, Dr. Kyle Williams, Dr. Patrick Whelan, Michal Tal, PhD, Dr. Omar Morales, Dr. Gary Kaplan and Dr. Tim Ubhi. - Dr. Susan Swedo, a scientist emerita at NIMH/NIH, is also expected to attend. - Susan Manfull said the goal is to prevent others from suffering like Alex did by supporting cutting-edge research and widening understanding among medical professionals and the public. - TAMF says the summit reflects collaboration across medical care, education, integrative wellness, in-home support and pharmaceutical innovation. - Sponsors highlighted for the 36 Hours event include Soleo Health, Fusion Academy, Restorative Health & Wellness and 60 Degrees Pharmaceuticals. - The summit will also include a June 12 dinner honoring researchers, clinicians and advocacy organizations. - Dr. Frankovich and TAMF board member Jadin O’Brien will serve as keynote speakers at the dinner.

Between the lines: - The summit appears aimed at closing a care gap that still leaves many families waiting for diagnosis and treatment. - The lineup suggests the field is trying to unify clinical care, research and advocacy around conditions that remain contested or under-recognized in many settings. - TAMF is using fundraising, convening power and public events to push both scientific work and wider awareness at the same time. - The release pairs medical advocacy with a policy win in Virginia, signaling a strategy that combines research, reimbursement and public recognition.

What’s next: - The Alex Manfull Fund 5K will take place on April 13 along Arlington’s Four Mile Run, led by O’Brien. - Funds from the 5K will support research and fellowship programs at Dartmouth Health, Harvard Medical School, Albert Einstein College of Medicine, University of Buffalo and Columbia University, among others. - TAMF said research grants will soon be announced for Herb Lachman, MD, and Sean Miller, PhD. - Lachman’s study will examine gut organoids containing a pathogenic DUOX2 variant and its link to gut-immune-brain axis dysfunction and neuropsychiatric decompensation. - Miller’s research will focus on neuropathological mechanisms in PANDAS/PANS using human brain tissue and cortical organoids. - More information is available in the dinner announcement and the 5K details.

The bottom line: - The Alex Manfull Fund is using a major June summit, new research support and public fundraising to push PANS and PANDAS into the medical and policy mainstream.