Little-Known Neuroimmune Illnesses Are Devastating Young People—Researchers and Advocates Seek Urgent Answers

Experts to convene at June 12–13 summit to drive critical research, diagnostic and treatment breakthroughs on PANS and PANDAS

ARLINGTON, VA, UNITED STATES, May 27, 2026 /EINPresswire.com/ -- Leading experts and advocates from around the world will convene for a 36-hour summit on June 12–13 outside the nation’s capital to drive urgently needed breakthroughs in the research, diagnosis, and treatment of infection-associated neuroimmune disorders that target young people.

The effort is being spearheaded by The Alex Manfull Fund (TAMF), a nonprofit founded in 2018 by William and Susan Manfull following the tragic loss of their only daughter, Alex, to the neuroimmune disorder of PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections).

PANS and PANDAS are inflammatory brain disorders typically triggered by common infections and metabolic disturbances. They occur when the immune system mistakenly attacks the brain, resulting in life-altering brain inflammation and an array of disabling physical and mental ailments. When identified and treated early with anti-inflammatories, antibiotics and immune-modulating therapies, patients often experience a dramatic turnaround, and many return to their pre-illness baseline.

Left untreated, PANS and PANDAS not only result in immediate and life-altering symptoms but also set the stage for future disability and compounding chronic illnesses. Persistent brain inflammation can lead to progressive neurological damage, increasing the risk of long-term psychiatric, cognitive, and autoimmune disorders–and even death.

“Far too many young people with PANS and PANDAS still experience significant delays in receiving an accurate diagnosis and appropriate treatment,” says TAMF Executive Director Susan Manfull, PhD. “Our goal is to prevent others from suffering like Alex did by facilitating cutting-edge research while growing understanding among medical professionals and the public of what these illnesses are and how to treat them.”

The gathering, billed as “36 Hours for PANS and PANDAS Advocacy in Motion,” includes a special working session of the world’s leading practitioners and researchers on the disorders on June 12, designed to expand knowledge and collaboration on the latest cutting-edge research and treatments.

Among the expected attendees are Dr. Jennifer Frankovich (Stanford Immune Behavioral Health Clinical Research Program), Dr. Herb Lachman (Albert Einstein College of Medicine, Depts of Psychiatry, Medicine, Genetics, and Neuroscience), Dr. Beth Latimer (Private Practice Neurologist, Bethesda, MD), Dr. Juliette Madan (Dartmouth Health, Neuroimmune Psychiatric Disorders Clinic), Dr. Kyle Williams (Director, Pediatric Neuropsychiatry and Immunology Program, Massachusetts General Brigham), Dr. Patrick Whelan (UCLA Health), Michal Tal, PhD (MIT), Dr. Omar Morales (Lyme Mexico), Dr. Gary Kaplan (The Kaplan Center for Integrative Medicine), and Dr. Tim Ubhi (Clinical Director & Founder of The Children’s e-Hospital and The London PANS Clinic).

Also attending is Dr. Susan Swedo, Scientist Emerita at NIMH/NIH Intramural Research Program and former Chief of Pediatrics and Developmental Neuroscience at NIMH. “We’re deeply honored to be with Dr. Swedo as we mark the 40th anniversary of the start of her groundbreaking work on PANDAS,” says Manfull.

Stakeholders across the continuum of PANS & PANDAS care are uniting in support of families impacted by these complex conditions, underscoring the critical role of collaboration across medical care, education, integrative wellness, in-home support, and pharmaceutical innovation.

TAMF proudly recognizes its key 36 Hours sponsors, including Soleo Health, a leader in specialty pharmacy and infusion therapy services; Fusion Academy, a fully accredited 1-to-1 middle and high school model supporting individualized learning; Restorative Health & Wellness, a women-founded integrative health center focused on complex chronic illness and patient-centered care; and 60 Degrees Pharmaceuticals, advancing innovative pharmaceutical development to improve patient outcomes. These organizations reflect a shared commitment to advancing awareness, access, and care for the PANS & PANDAS community.

Convening interdisciplinary gatherings of the world’s foremost experts on PANS and PANDAS is a hallmark of The Alex Manfull Fund. “Our experience is that brainstorming with fellow researchers and clinicians in an informal, unrushed setting lays the foundation for some remarkable discussions and insights,” Manfull says.

The 36 Hours summit also features a special dinner on June 12 honoring the researchers, clinicians, and advocacy organizations whose dedication is driving progress across the US and abroad. Keynote speakers include Dr. Frankovich and TAMF Board Member and US Olympic Bobsled athlete, Jadin O’Brien.

On April 13, the 4th Annual Alex Manfull Fund 5k will kick off along Arlington’s Four Mile Run, led by O’Brien, who also holds 3x NCAA pentathlon and 10x All-American heptathlon titles. Funds raised will fund critical research and fellowship programs at Dartmouth Health, Harvard Medical School, Albert Einstein College of Medicine, University of Buffalo, and Columbia University, among others.

Recipients of soon-to-be-announced TAMF research grants include Herb Lachman, MD (Albert Einstein College of Medicine), whose study is titled "Molecular and cellular analysis of gut organoids containing a pathogenic variant in DUOX2: a candidate gene for gut-immune-brain axis dysfunction and neuropsychiatric decompensation," and Sean Miller, PhD (University of Buffalo), whose research will focus on “Defining Neuropathological Mechanisms in PANDAS/PANS Using Human Brain Tissue and Cortical Organoids.”

The events coincide with historic legislative changes related to PANS and PANDAS in Virginia, where Governor Abigail Spanberger recently signed an updated Essential Health Benefits (EHB) benchmark plan that includes medically necessary care for the disorders. This makes Virginia one of the first states in the US to explicitly include PANS and PANDAS in its EHB.

To learn more about The Alex Manfull Fund dinner and 5K, visit https://thealexmanfullfund.org/tamf-2026-going-the-distance-dinner/ and https://thealexmanfullfund.org/tamf-2026-5k-run-walk-washington-dc/.
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ABOUT THE ALEX MANFULL FUND
When Susan and William Manfull lost their only child, Alex Manfull, to PANDAS, they established the Fund in their daughter’s memory to increase awareness about these disorders, especially in adolescents and young adults, and to advance education for physicians, mental health professionals, and educators, helping them to recognize and treat these disorders earlier and more effectively.

ABOUT PANS/PANDAS
Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS) and Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS) develop after common viral and bacterial infections, triggering the immune system to attack healthy brain tissue. Symptoms typically include obsessive compulsive behaviors, restrictive eating or tics. Other symptoms may include cognitive decline, behavioral issues, anxiety, insomnia, and urinary frequency. Onset may be sudden and dramatic. Federal research funding is grossly insufficient.

Angie Gentile
The Alex Manfull Fund
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