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Vermont Rallies for Children Battling Autoimmune Brain Disorders

On October 11th, the Burlington Surf Club was filled with determination and hope as more than 200 participants gathered for the Second Annual Vermont PANS/PANDAS 5K Run/Walk. This heartfelt event was organized to shed light on pediatric autoimmune brain disorders, which can abruptly alter children's lives.

Hosted by the Vermont PANDAS/PANS Network, the gathering united families, clinicians, and advocates to raise awareness of Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS) and Pediatric Acute-onset Neuropsychiatric Syndrome (PANS). These debilitating conditions can be triggered by infections, including strep throat or COVID-19, causing the immune system to mistakenly attack the brain, leading to sudden obsessive thoughts, anxiety, tics, and a host of other challenges.

Families affected by these disorders face devastating consequences. Recognition and treatment remain difficult due to a general lack of awareness surrounding these conditions. As Alexandria Rains, Clinical Case Manager and Neurodiversity Specialist at NFI Vermont, elaborated, children experiencing PANDAS must grapple with rapid-onset brain inflammation that alters their personalities and behaviors. Moreover, families find themselves in an exhausting struggle to gain acknowledgment from medical professionals and ensure coverage for necessary treatments.

The event succeeded in raising over $14,000, which will fund the new Neuroimmune Psychiatry and Immunology Fellowship at Dartmouth Health, aimed at training physicians to better diagnose and treat children suffering from PANDAS/PANS. Dr. Steven Schlozman, Chief of Child Psychiatry at the University of Vermont, emphasized the rarity yet critical nature of these conditions, highlighting the necessity for clinicians to recognize and understand the different approaches required for effective treatment.

Adrienne and Devin Gaskell founded this event in 2024 after their own child was diagnosed with PANDAS following months marked by unexplained psychiatric symptoms and misdiagnoses. The couple learned about PANDAS from a teacher who had come across information about the disorder online. As Adrienne Coléon Gaskell passionately articulated, witnessing their child lose parts of themselves to this illness compelled them to take action. The remarkable turnout at this year’s 5K Run/Walk demonstrates Vermont's commitment to advocacy and compassion for affected families.

The event garnered support from notable sponsors, including CrossFit Burlington, Optum, Mr. Louie, and The Alex Manfull Fund; all of which are dedicated to enhancing education, awareness, and research into PANDAS/PANS. The community’s collective efforts create a network of understanding and hope, creating much-needed visibility for those affected by these challenging conditions.

Vermont's community is demonstrating that awareness and advocacy can indeed pave the way toward better recognition and treatment of pediatric autoimmune brain disorders. The enthusiasm and commitment displayed at the 5K are just the beginning of a much larger conversation about the need for understanding and support for families facing these unexpected challenges. As more people uncover the complexities of these conditions, there is hope that pediatric PANDAS and PANS will no longer remain in the shadows but instead receive the acknowledgment and care they desperately need.