New PANDAS Breakthrough | A Gripping Patient Story | December Support Group
Published 7 months ago • 2 min read
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)
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!
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!
Hi Reader, We’re excited to share our newest webinar featuring Dr. Craig Shimasaki, CEO of Moleculera Biosciences. In his seminar Dr. Shimasaki delivers a compelling exploration of the immunological underpinnings of neuropsychiatric conditions, weaving together the historical context and our evolving understanding of PANDAS/PANS and Sydenham’s chorea. Click the image to watch the video. Dr. Shimasaki highlights the difficult journey faced by many patients using Moleculera Biosciences'...
May 19th, 2025 Hello Reader, Your unwavering support has been the backbone of groundbreaking PANDAS/PANS research over the years, and we’re deeply grateful for your commitment to advancing hope and healing for PANDAS/PANS children and adults. Today, we’re reaching out with an urgent request to sustain critical research during a unique moment in history where many U.S. universities are losing billions in research funding. For over a decade, The Agalliu Lab at Columbia University has led...
Hello Reader, We’re thrilled to share with you valuable resources and opportunities to connect and learn about PANDAS/PANS in our newest edition of the PANDAS Network newsletter. Inside, you’ll find the recording of a new PANDAS/PANS discovery by a talented young PANDAS/PANS biomedical researcher, a save-the-date for an upcoming PANDAS/PANS presentation by Dr. Craig Shimasaki, and details and Zoom link for our newest support group meeting. We hope this will provide inspiration, knowledge, and...