As the lights of the holiday season begin to glow, we pause to look back on 2025 with hearts full of gratitude for your support. This has been a year of steady, courageous steps forward: new advocacy voices rising in Eastern Europe, youth leaders taking the reins in America, physicians crossing oceans to learn from one another, and every major U.S. nonprofit uniting to protect vital research.
What follows is a celebration of this year’s progress, an honest acknowledgment of the distance still to travel, and a reminder that together we are turning the tide, one child, one doctor, one country at a time.
But first, let's begin the last newsletter of the year with a heartfelt patient story.
A Patient Story: Max and His Mother's Fight For Treatment
Four-year-old Max went from happy preschooler to a child consumed by severe tics, aggression, insomnia, hyperactivity, and crippling separation anxiety, days after his second strep throat infection. His pediatrician agreed PANDAS was “very probable,” yet refused to diagnose, let alone treat it.
A top neurologist at a children’s hospital nearby spent two hours ruling out brain tumors, encephalitis, and seizures via Zoom. The doctor later admitted her neurology team should get together and discuss PANDAS again to reassess the “illness legitimacy.” The only treatment offered that day was a sedative to treat the “simple tic disorder.”
Today, Max is finally healing, thanks to an out-of-network specialist. His mother asks the question so many families live with after a hard-fought battle with PANDAS/PANS: “[H]ow many children are misdiagnosed?”
This year, new voices joined our chorus of hope: an advocacy group was born in Romania, and a dedicated science-writer mother in Poland launched the country’s first parent-focused publication on PANDAS/PANS.
In the United States, your generosity made possible the launch and expansion of the National PANDAS Youth Alliance, a youth-led movement now carrying legislative advocacy into new states.
The Bittersweet Reality of Increased Awareness
Since 2009, our small team of volunteers has answered thousands of calls and emails from families on every continent. The increased awareness we celebrate is bittersweet because too many children still wait far too long for proper diagnosis and treatment.
Rising in parallel to the increased PANDAS awareness is a more virulent strain of Group A Strep known as M1UK, now tracked worldwide. I have personally seen the growth of a dangerous strep bacteria, which might explain numerous reports of sudden, severe Sydenham chorea (closely related to PANDAS/PANS) and acute onset of psychiatric conditions from countries that rarely observe these clinical presentations in children.
PANDAS/PANS Scientific Meeting In Sweden
Loosened Group A Strep testing guidelines in some countries have made recognition harder likely accelerating the rapid increase in Sydenham chorea cases following the M1UK strep outbreak. In the face of these challenges, something beautiful is happening: clinicians and scientists are coming together across borders, thanks to your support.
A child psychiatrist from Turkey traveled to Italy to learn alongside mentors.
In the small coastal village of Arild, Sweden, we convened an urgent meeting with physicians from Sweden, the UK, and Italy, to learn about the dangers of the M1UK strep strain. Many PANDAS/PANS researchers shared their expertise including Madeleine Cunningham, PhD, and Chandra Menendez, PhD.
The insights from these gatherings are profound. We will share detailed updates and webinars early in 2026, because research remains the heartbeat of everything we do.
The Swedish coast captured during the 2025 PANDAS Meeting in outside of Arild, Sweden
Protecting and Advancing Research - Together
This year, every major U.S. PANDAS/PANS nonprofit stood shoulder-to-shoulder to protect and fund two vital research positions studying the role of strep in PANDAS/PANS brains:
Dr. Chandra Menendez (Neuroimmunologist, University of Oklahoma Health Science Center)
Because of you, both positions are secure! Your donations also continue to power the Columbia University PANDAS Genetic Cheek-Swab Study, which has grown steadily and will carry forward into 2026 with even greater momentum.
A Heartfelt Holiday Thank You
Seventeen years ago, if someone had said ‘PANDAS,’ most of us would have pictured a black-and-white bear. Today, because families like yours refused to give up, children in Romania, Poland, Turkey, Sweden, and beyond are finding their way to diagnosis and healing sooner. That is the miracle we carry into this holiday season.
From the bottom of our hearts, thank you, for every dollar, every shared story, every late-night email of encouragement. You are the reason doors of hope are opening wider, in more countries, for more children than we ever dreamed possible.
If you’re able, please consider giving again this year. Every gift will help us carry our advocacy and research momentum into 2026 and beyond.
Wishing you a happy holiday season and a fruitful 2026.
Hi Reader, This is an important meeting of four leading scientists in the PANS field. The doctors will present their findings and dialogue about autoimmune versus epigenetic findings in PANDAS/PANS children. Questions will be taken during the dialogue portion. This will be recorded and available to public. For this event we are reserving attendance to clinicians to ensure spots are available for this audience. Register Here Visit The Website Thank you, The PANDAS Network Team 655 Oak Grove...
🎃 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...
🎃 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...