By Debbie Sharp
Special Education Advocate
Earlier this month, hundreds of families, clinicians, and advocates gathered on the Boston Common for the Look Foundation’s Walk 2025: Making Strides for PANS & PANDAS. Beneath a sea of teal and orange, caregivers, practitioners, advocates, legislators, business leaders, children and young adults walked shoulder-to-shoulder all united by one powerful message: PANS and PANDAS is not rare, it’s rarely diagnosed.
Among the over 800 in-person and virtual participants and 67 teams of supporters on the Boston Common that day were five teams of North Reading families comprised of 28 walkers whose 108 supporters contributed $6,785 toward the $246,108 raised for PANS/PANDAS awareness and grants programs.
What are PANS and PANDAS?
PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) and PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) are medical conditions that cause a severe onset of neuropsychiatric symptoms, often overnight, in otherwise healthy children.
Symptoms can include extreme anxiety, OCD, motor and vocal tics, emotional dysregulation, food restrictions, and more.
PANDAS is triggered by a strep infection, while PANS can be triggered by other infections (i.e.: COVID, Lyme, Mycoplasma, Mono, etc…, environmental factors, or metabolic disturbances. In both, the immune system mistakenly attacks the brain, leading to inflammation and profound behavioral and neurological changes.
Why Awareness Matters
For many families, the road to diagnosis is long and isolating. Because symptoms often appear psychiatric, children are frequently misdiagnosed or dismissed. Yet with proper medical treatment, addressing the underlying immune dysfunction, recovery is possible.
“Too many parents are told their child’s sudden regression is psychological, when it’s actually medical,” said one advocate during the walk. “We need to educate providers and empower families to recognize the signs sooner.”
Raising awareness isn’t just about understanding science, it’s about compassion. It’s about believing parents when they say something changed in their child.
A Movement Growing Stronger
The Look Foundation has become a leading voice across the nation, providing education, financial support, advocacy and awareness for PANS/PANDAS families. Their annual walk not only raises funds for their “Healing Grant Program,” but also brings hope, reminding families that they are not alone.
Partner organizations like Aspire.care, another national nonprofit dedicated to PANS and PANDAS awareness, offer evidence-based resources, physician education, and advocacy training to improve care access across the country. Together, these groups are changing the narrative from isolation to action.
How You Can Help
1. Learn: Visit www.aspire.care and www.lookfoundation.org to educate yourself and others.
2. Listen: If a parent says their child changed overnight, listen with empathy, not skepticism.
3. Advocate: Support policies that increase research funding, provider education, and insurance coverage for treatment.
PANS and PANDAS may not be household names yet. Thanks to the efforts of families, advocates, and organizations like the Look Foundation and Aspire, the tide is turning. October 4th’s walk on the Boston Common was more than a fundraiser. It was a testament to hope, healing, and the collective strength of a community refusing to be silenced, because when it comes to PANS and PANDAS, the truth is simple: It’s not rare, it’s rarely diagnosed.