🎃 October 2025
Hi Reader,
October 9th was World PANS/PANDAS Awareness Day, and landmarks across the globe were lit in red and green to raise awareness for PANDAS/PANS. I am still surprised at how fast the PANDAS/PANS community is growing, as there was record-breaking impact, turning numerous landmarks red and green across Canada, the UK, Sweden, Italy, Poland, Spain, South America, and the U.S.
In other news, the National PANDAS Youth Alliance and young adults who have overcome PANDAS/PANS recently met with legislators in Washington, DC, California, and Texas to advocate for increased federal and state funding for PANDAS/PANS research, insurance coverage for evidence-based treatments like IVIg, and improved diagnostic guidelines to ensure timely care for affected children. Generous PANDAS Network donors made much of this advocacy possible.
Speaking of IVIg, your generous donations helped fund an exciting new research study.
Understanding the PANS IVIg Study: New Insights for Our Community
Thanks to your generous donations, the PANDAS Network awarded Dr. Shrujna Patel at the University of Sydney with a $50,000 grant to study the immune cells of children with PANS before and after IVIg treatment. Dr. Patel found an array of genes in their white blood cells that were dysregulated, especially those controlling immune response, epigenetic regulation, and protein production. However, after IVIg treatment, these genes largely return to normal.
This breakthrough, from Dr. Russell Dale’s lab, shows IVIg doesn’t just calm symptoms—it helps reset the immune system at the molecular level, giving us powerful new evidence to advocate for timely, funded treatment.
These advances didn’t come from the NIH or the American Academy of Pediatrics; they came from parents and supporters like you who raised the bar on diagnosis and treatment. Despite many daunting medical challenges, we persist because our children have no other choice. Click below to read a breakdown of the study in simple terms.
In our next newsletter issue, we will reveal the results from another exciting research report, also funded by your generous donations from 2022/23. Stay tuned!
PANDAS Support Group November 6th
Wednesday, November 6th | 5:00–7:30 PM EST | Zoom
Join us for a nurturing evening designed for those impacted by PANDAS/PANS.
5:00–6:30 PM EST: Support Group
Our support groups offer a safe, confidential space to share your journey—frustrations, victories, fears, and hopes. No judgment, just understanding. Facilitated by experienced parent moderators who’ve walked this path.
6:30–7:30 PM EST: Relax & Restore Sound Bath
Immediately after, we are offering a guided sound bath designed to calm your sympathetic nervous system. Bookmark this email so you can access the support group using the button below.
Help Shape Support for PANS/PANDAS Parents: Take the Australia Caregiver Survey
Macquarie University researchers, led by PhD candidate Samantha Cuming and Professor Maria Kangas, are studying the unique support needs of parents raising children with PANS/PANDAS—compared to parents of neurotypical kids. Your input could directly improve future programs for PANDAS/PANS families.
The anonymous online survey takes 20–30 minutes and is open to Australian parents (18+) of children aged 4–18 with PANS/PANDAS symptoms for at least 12 months. A shorter version is available for parents without diagnosed children.
Bonus: Complete the survey for a chance to win one of five $50 e-gift vouchers. Some PANS/PANDAS parents may also be invited for a paid 60–90-minute interview in early 2026 ($75 voucher).
A Brighter Tomorrow: Built by Us, for Our Children
As we close this chapter of new research and shared resolve, imagine a horizon where every flare is met with swift answers, every child’s laughter rings free of fear, and every parent stands wrapped in a community that never wavers. That future isn’t a distant dream; it’s being built in labs, in advocacy campaigns, and by informing legislatures. Keep holding the light; together, we’re turning hope into history.
Together we can make a difference in the lives of those living with PANDAS/PANS.
Sincerely,
Diana Pohlman
Executive Director
PANDAS Network