🌲 December 2024 🎁

Hello Reader,

Seasons greetings! Thank you for your continued donations that allow us to support research and advocate for families.

We want to take a minute to share the new PANS guidelines announced yesterday by the American Academy of Pediatrics (AAP), explaining that "the cause of PANS is unknown." The AAP further explains that "[PANS] is triggered by multiple factors, including psychological trauma, genetic predisposition, and infections," but "not all cases of PANS are triggered by an infection," and "no single microbe has been associated [with PANS]."

Our board of directors finds these guidelines disingenuous. The continued medical gaslighting by the so-called "experts" underscores exactly why the PANDAS Network exists. Sure, we support PANDAS/PANS science, but equally important is fighting for you and your children. Rest assured that we will make our voices heard.

On to some more positive news!

We have some exciting announcements, including new PANDAS/PANS research supported by you the parents, Emeline's uplifting patient story, and an exciting new tool to help you overturn your IVIg insurance claim denial.

Let's dive in.

How Mutation in One Gene, RXRa, Impacts the Brain of Children with PANDAS/PANS

​Our previous newsletter shared the newly published results of an important new PANDAS/PANS discovery, partly supported by you, the parents. We want to keep the scientific momentum going with a research update of yet another high-impact PANDAS/PANS research project that you helped support! This new preliminary PANDAS/PANS data comes to us from Dr. Ugur Akcan, a talented Postdoctoral Fellow in the Agalliu Lab at Columbia University Medical Center. Dr. Akcan's research is focused on identifying the role of a mutated gene found in a subset of children with severe PANDAS/PANS.

The gene, known as retinoid X receptor alpha (RXRa), encodes a protein that Dr. Akcan discovered plays a key role in helping microglia, the brain's immune cells, respond to a group A strep infection. This project is a critical step towards revolutionary treatment concepts for PANDAS PANS.

Emeline's Story, From Despair To Hope

Emeline's parents realized their daughter checked all the boxes for a PANDAS diagnosis but what they didn't realize was how difficult it would be to find a health professional who would listen to them.

After finding a neurologist who agreed that PANDAS was the most likely said, "This [hospital] network doesn’t believe in PANDAS and if we stayed here, we wouldn’t like the outcome so we should leave [and find a new physician]."

Overturned: How to Fight IVIG Denials with Claimable

Denied IVIG? You’re not alone. Join us for a powerful conversation with Warris Bokhari, CEO of Claimable, and Diana Pohlman, Executive Director of PANDAS Network. Learn how Claimable’s free platform simplifies IVIG appeals and helps families fight denials.

Join us: on January 7th at 2:30 pm PT / 5:30 pm ET
​Register to join→​

Wishing you a happy and healthy holiday season,

Diana Pohlman,

Executive Director