December 2024

Hello Reader,

Welcome to the newest edition of the PANDAS Network Newsletter! We have some exciting information to share, including a brand new PANDAS/PANS discovery, partly funded by your generous donations, that should change how health professionals understand the cause of PANDAS/PANS.

But before we dive into the details, we want to remind you just how impactful your generous donations have been towards accelerating scientific advancements in PANDAS/PANS. This is especially true when you realize the science funding agency in the US, the NIH, is currently only funding one PANDAS/PANS scientist.

Here are just a few high-impact discoveries made because you took matters into your own hands by donating to the PANDAS Network:

• MRI studies reveal the basal ganglia is inflamed in PANDAS/PANS children. (2015/16)
• The autoimmunity-associated cytokine IL-17, is elevated in PANDAS/PANS children. (2017)
• IVIg treatment 're-wires' white blood cells toward a healthy state (announcements to come soon). (2024)
• Specific autoantibodies are found in the blood of PANDAS/PANS children (today's announcement). (2024)

See a complete list of donation allocations and funded research projects since 2013 in the 'OUR IMPACT' section.

New PANDAS/PANS Autoantibodies Found

Longtime friends of PANDAS Network, Dr. Madeleine Cunningham and Dr. Chandra Menendez (U of Oklahoma Health Sciences Center), just revealed that patients with PANDAS/PANS who show symptoms of tics and OCD have high levels of an autoantibody called anti-dopamine receptor 1 (anti-D1R) while those with related condition characterized by sudden uncontrollable movements have high levels of the anti-dopamine receptor 2 (anti-D2R) autoantibody.

YOUR GIFTS & ADVOCACY helped advance this research!

​Read more about this important discovery and how it could change the way health professionals understand and treat PANDAS/PANS.

Read the full study.

A Gripping Patient Story: How IVIg Saved a 7-Year-Old Girl From Devastating PANS Symptoms

"Spring of 2021, our 7-year-old daughter came home from school acting like a different person. She was shy and fearful all of a sudden. Believing it was a mental health issue, we started working with a therapist. But as the weeks passed, her symptoms—crippling anxiety, obsessive thoughts, and behaviors—grew worse, unimproved by traditional therapy." Read more.

A Message From Executive Director Diana Pohlman

I recently traveled to Sweden to gather genetic samples of PANDAS and Sydenham Chorea patients for Dr. Dritan Agalliu's (Columbia University) effort. I spoke to many people from the U.K. as well, where a new strep strain is causing children to be misdiagnosed as "functional disorder" rather than Sydenham Chorea or PANDAS.

Misdiagnosis is scary for families and harms the child. I'm passionate about correcting this wrong as is Moleculera Labs, the Cunningham Lab , and the entire consortium of doctors and researchers. Please consider donating to PANDAS Network in your year-end giving. It keeps our website up and funds important projects!

Wishing you a happy and healthy holiday season,

Diana Pohlman