Introduction (2 minutes)
Advocate:
“Good [morning/afternoon], and thank you for meeting with us today. My name is [Your Name], and I’m here as a [parent, patient, healthcare provider, —adjust as needed] with a grassroots group of advocates from across the country to speak on behalf of children and families affected by PANS and PANDAS. 

We’re here to ask for your support in securing $5 million in the FY26 Labor-HHS appropriations bill for research into PANS and PANDAS. This funding is essential to improving diagnosis, treatment, and outcomes for the many thousands affected across the country. 

We know that members of Congress care deeply about the mental and physical well-being of America’s children, and we appreciate the opportunity to bring attention to these devastating and often overlooked conditions. We would also like to thank you for past Congressional support of PANS/PANDAS. We are grateful and it’s making a difference.”

What Are PANS and PANDAS? (3 minutes)
Advocate:
“PANS and PANDAS are acronyms for neuroimmune disorders caused by a misdirected immune response to infection that leads to brain inflammation. This inflammation results in a sudden and severe deterioration of physical and behavioral function including debilitating psychiatric symptoms.

In the case of PANDAS, the infectious trigger is strep. In PANS, the trigger can be other infections including flu, Covid, Lyme and other common childhood illnesses. 

PANS and PANDAS were first described as pediatric conditions, but new research is showing they can impact people at any age. 

Symptoms include [feel free to personalize but here are examples: loss of motor control, tics, sleep disturbance, developmental regression, aggression, OCD, anorexia, and suicidal ideation.]

Without early intervention, children are at risk for long-term disability. Tragically, some cases have led to unintentional loss of life.”

Why We Need Federal Research Funding (3 minutes)
Advocate:
“Despite the devastating impact of PANS and PANDAS, research funding remains critically insufficient. The National Institutes of Health (NIH) has not allocated adequate resources to develop diagnostic tests or more effective treatments.

Right now:

• Children are frequently misdiagnosed with psychiatric disorders because their underlying infections and brain inflammation are not recognized.

• Without targeted research, doctors lack the tools to properly diagnose and treat these children.

• Families spend years navigating the medical and behavioral health systems at a tremendous financial and emotional cost.

[Instead of the above bullet points, you can take this opportunity to tell a brief version of your story if you are comfortable.]

By securing $5 million in dedicated funding, we can accelerate the research needed to improve early diagnosis, prevent long-term disability, and ensure these children receive the right care at the right time.”

The Consequences of Inaction (2 minutes)
Advocate:
“Without Congressional support, children will continue to be misdiagnosed and suffer unnecessary and prolonged disability. Families will continue to struggle for answers while their children deteriorate.

In the midst of a national youth mental health crisis, it is imperative that we understand how many children diagnosed with psychiatric disorders may actually have a treatable immune-mediated illness. Funding this research could save lives and restore futures.”

Call to Action (2 minutes)
Advocate:
“We are asking your office to support the inclusion of $5 million for PANS and PANDAS research in the FY26 Labor-HHS appropriations bill.

Would [Senator/Representative] be willing to submit or sign onto a letter of support for this funding? We are happy to provide draft language and additional information.

We appreciate your time and commitment to children’s health. Thank you for considering this urgent request.”

Closing & Follow-Up (1 minute)

Share your folder: Point out that our requests are included in folders as well as a point paper. If your meeting is virtual, we will get you materials that you can send ahead of time by email. 

• Offer to provide additional materials.

• Ask for a follow-up point of contact.

• Thank them again for their time and attention to this issue.

Cheat Sheet and Notes:

PANS stands for Pediatric Acute-Onset Neuropsychiatric Syndrome 

PANDAS stands for: Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcus 

NAPPA is the National Alliance for PANS/PANDAS Action. We are a steering committee of volunteer leaders from across the country (not a nonprofit.) 

Tough Questions:

Questions will come up at meetings and you might not know the answer. It’s completely fine to ask for contact information and pass questions along to us and we will try to answer! They can also look at our website: www.NappaAction.org

Take Notes:

Try to jot down a few notes during and right after each meeting so you don’t forget! We will ask you to add your notes from each meeting to a spreadsheet next week. 

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Sign-On Letter:

We are looking for members of Congress who can be our “champions” and either lead a letter writing campaign or “sign-on” to a letter in support of PANS/PANDAS. If you are in a meeting and this comes up, that’s great, and we will follow up with more information. 

Immediate Questions: If anything immediate comes up, please feel free to text Amanda Crowley at 917-757-3867.