Principal investigator Dritan Agalliu, Ph.D., Chair of the PANDAS Network Scientific Advisory Board and Postdoctoral Research Fellow Ugur Akcan PhD, and Charlotte Wayne have worked to understand how streptococcal bacteria underlie the acute encephalitic onset in children with PANDAS and Sydenham’s chorea. Below is a pre-recorded interview of Dr. Akcan explaining the step-by-step processes for isolating… Continue reading New Immunological Mechanisms of PANDAS and Sydenham’s chorea Revealed
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PANDAS Neurologic Stem Cell Research, iPSC Modeling
Understanding the Role of Genetic Risk Factors for PANDAS UsingHuman Induced-Pluripotent Stem Cells and Disease Modeling A PANDAS Network $50,000 grant to the Irene Munk Pedersen Laboratory,Scintillon Research Institute (San Diego, CA) received a grant to conduct a pilot study examining the direct effects of illness on the brains of children with PANDAS/PANS. The Pedersen… Continue reading PANDAS Neurologic Stem Cell Research, iPSC Modeling
PANS IVIG Study: Gene Expression Changes in Immune Cells After Treatment
A recent discovery partly funded by a $50K grant from PANDAS Network has uncovered something exciting: in kids with PANS, a large group of genes in their white blood cells are out of whack—but they bounce back after IVIg treatment. These genes were found to fall into three main categories: Since you, the parents, played… Continue reading PANS IVIG Study: Gene Expression Changes in Immune Cells After Treatment
Joint Statement Concerning AAP PANS Report
Appeal an IVIG Health Insurance Denial
Interview with the CEO of Claimable: Helping Families Appeal IVIG Therapy Denials In a recent interview, we spoke with Dr. Warris Bokhari, the CEO and Co-Founder of Claimable, who helped build a company dedicated to assisting families who have been denied health insurance claims, such as IVIG therapy for PANDAS/PANS. He shared insights into the company’s… Continue reading Appeal an IVIG Health Insurance Denial
How Mutation in One Gene, RXRa, Impacts the Brain of Children with PANDAS/PANS
*This research is preliminary as projected to be submitted for publication in 2025 Ugur Akcan, a postdoctoral research scientist in the Agalliu Lab at Columbia University has investigated the effects of a genetic mutation identified in some children with PANDAS and PANS. This mutation affects the Retinoid X Receptor Alpha (RXRa) gene, a transcription factor… Continue reading How Mutation in One Gene, RXRa, Impacts the Brain of Children with PANDAS/PANS
New Strep Research
Read more here Read the full research study here
Rooted in Reseilience: A Journey of Growth with PANDAS and PANS
Watch the video here A Short Film Produced by StoryQ Rooted in Resilience: A Journey of Growth with PANDAS and PANS is a moving short documentary chronicling the lives of three teenagers—Jordana, Trent, and Kendall—over the course of three years (2020 – 2023) as they share their journey of living with and recovering from PANDAS (Pediatric… Continue reading Rooted in Reseilience: A Journey of Growth with PANDAS and PANS
2024 New Perspectives on Streptococcal Infections and Related Disease
The 2nd edition of the online open-access book is complete and can be found at: https://www.ncbi.nlm.nih.gov/books/NBK587111 Two chapters related to PANDAS, PANS, and Sydenham Chorea are listed below: Susan Swedo, Chandra M. Menendez, and Madeleine W. Cunningham. Created: July 7, 2024; Last Update: September 13, 2024. Madeleine W. Cunningham and Christine A. Kirvan. Created: March… Continue reading 2024 New Perspectives on Streptococcal Infections and Related Disease
PANDAS Network $50K Grant is Used to Fund a New Stem Cell Model to Accelerate PANDAS/PANS Research
Generous donations to the PANDAS Network in the amount of $50,000 from the 2023 Research Fund was awarded to Dr. Irene Munk Pedersen for her exciting PANDAS/PANS research. Her laboratory developed a way to model the human blood-brain barrier (BBB) in 3D by converting human skin cells into stem cells. These stem cells are grown… Continue reading PANDAS Network $50K Grant is Used to Fund a New Stem Cell Model to Accelerate PANDAS/PANS Research