Impact Report

June 2024 – May 2025

Thank you!

Dear Supporters,

Because of your support, this year has been nothing short of extraordinary, and we have so many exciting things to share with you throughout this report!

At the core of our mission is clinician education. Our vision is that families trudging through the misery of PANS/PANDAS will not be left to navigate a devastating medical condition alone but instead will be able to find compassionate medical care and rapid relief from suffering by well trained clinicians. With that goal in mind, we launched an extraordinary new program in January that features a comprehensive weekly accredited educational series and mentorship for clinicians seeking to enhance their ability to care for individuals with PANS/PANDAS, autoimmune encephalitis, and related autoimmune and inflammatory conditions that present with neuropsychiatric symptoms.

Neuroimmune Foundation is now a Project ECHO® Hub, which is extremely exciting as it brings a tremendous amount of credibility and exposure to our work and to these inflammatory brain conditions. ECHO Hubs are located at major academic institutions, AAP chapters, and other similar organizations, so it is both exciting and humbling for our organization to be named a hub. More importantly, it enables us to utilize this platform to disseminate knowledge about PANS and related neuroimmune conditions widely.

When I first learned about the model, I was elated listening to the founder of Project ECHO® describe how he went from being one of the only specialists treating Hepatitis C in his area and having a year-long wait to having only a two-week long wait, having trained dozens of clinicians to treat Hepatitis C. Most importantly, with his mentorship across six to twelve months, these clinicians had similarly positive outcomes with patients. A very compelling factor for me was the dozens of studies demonstrate the effectiveness of the Project ECHO® model in training physicians. A JAMA study found that patients with Hepatitis C who received care under the model had similar outcomes to those who received care in academic medical centers. Essentially, community physicians are being effectively trained to treat complex conditions thanks to ongoing and intensive mentorship using the ECHO model. This strikingly effective collaborative model of medical education and care management trains clinicians to deliver expert-level care to patients. In addition to the US, clinicians from Canada, Australia, Peru, Ireland, India, Columbia, Hungary, Romania, Poland, Singapore, Saudi Arabia, UAE, and Sweden have joined our ECHO every week for the past six months. It has been exciting to know that we are changing care for patients and families throughout the world!

In some of my family’s darkest days, one of my family members would often ask me, “Do I have a bright future?” That question broke my heart and continuously drove me to do everything in my power to ensure I could honestly answer “Yes.”

I sincerely believe the launch of Neuroimmune’s ECHO represents the ever-brightening light at the end of the tunnel for our community that has suffered so much not only from the actual symptoms of PANS but from medical dogma and stigma.

I want to express my deep gratitude to each of you who have supported our work over time. Your donations, volunteering, and sharing of free CME with clinicians have been instrumental in changing the way clinicians view PANS, PANDAS, and related neuroimmune conditions. We couldn’t have reached this huge milestone without you, and we’re excited to continue changing the neuroimmune landscape with your support!

With Gratitude,

Anna Conkey

Executive Director and Founder
Neuroimmune Foundation
June 2025

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Survey Data

To ensure that our educational activities are having the intended impact, we follow up regularly with clinicians who have attended our CME events or accessed our resources in order to find out the impact our programs had on their medical practices, and ultimately their patients. The data shows clinicians find these programs crucial and valuable.

Percentages rounded to the nearest whole number

Has Neuroimmune’s ECHO, Conference, On-Demand CME, and other resources helped you feel more competent in diagnosing and treating PANS/PANDAS?

Did you find Neuroimmune’s tools, materials, and access to CME and ECHO meetings, useful for diagnosing and treating patients?

Was your perception of PANS/PANDAS changed as a result of the Inflammatory Brain Disorders Conference, On-Demand CME, and/or ECHO meetings?

How important is ongoing CME on inflammatory brain conditions including PANS/PANDAS in helping you feel confident diagnosing and treating these con¬ditions?

As a result of the Inflammatory Brain Disorders Conference, ECHO and/or On-Demand CME, did you reconsider or consider for the first time that a patient might have an inflammatory brain condition including PANS/PANDAS?

2024 / 2025

A Review of the Past Year:
The Impact of Our Programs

Launched the world’s first PANS/PANDAS related ECHO®

— called Psychiatric Presentations with a Neuroimmune Basis ECHO — which featured 25 weeks of comprehensive and intensive Continuing Medical Education to physicians around the world including Canada, Australia, Peru, Ireland, India, Columbia, Hungary, Romania, Poland, Singapore, Saudi Arabia, UAE, and Sweden!

We have now formally educated

7000+ clinicians

in 70+ countries around the world through our CME programs!

Engaged directly with major insurance providers to advocate for improved coverage of IVIG and related immunotherapies — working to bridge the gap between our community’s urgent medical needs and existing reimbursement policies. These strategic discussions mark a critical step toward ensuring equitable access to life-changing treatments and reducing financial barriers for families navigating complex neuroimmune conditions. Many of them attended our CME events free of charge

Distributed PANS/PANDAS Guides created in collaboration with Stanford and leading experts to

10,000+

clinicians nationwide

providing them with concise, evidence-based tools to recognize, diagnose, and manage these complex neuroimmune disorders. These guides empower clinicians to deliver timely, informed care to affected patients and families.

 

Received Charity Navigator’s highest rating for the second year in a row:

4/4 stars

scoring 100% for overall Impact, Leadership, Accountability and Finance. Neuroimmune Foundation’s rating on Charity Navigator’s site states, “If this organization aligns with your passions and values, you can give with confidence.”

Secured a presence at the

National AAP Conference

— one of the most influential gatherings in pediatric healthcare— as an official exhibitor. This strategic move positions us to engage directly with leading clinicians, researchers, and advocates, expanding awareness of PANS/PANDAS on a national stage.

Offered free CME and educational resources to residents in

150+ medical residency programs

By empowering the next generation of physicians with education on PANS, we are driving a culture shift in medical understanding of neuroimmune disorders.

Partnered with Developmental Neuroscience to publish another

Peer-reviewed Special Issue

showcasing cutting-edge findings from the Inflammatory Brain Disorders Conference. This collaboration not only advanced the scientific discourse on neuroinflammation but ensured free open access for clinicians, patients, and families—breaking down barriers to knowledge and fostering informed, inclusive engagement across the medical and patient communities.

Offered

free accredited Continuing Medical Education to over 100,000 clinicians!

We provided free, comprehensive support to 32,000+ patients and families offering access to a private online community, direct communication through phone and email, and expert-led Q&As and webinars. Through this network, families connected with top physicians, therapists, pharmacists, attorneys, and researchers — receiving trusted guidance, emotional support, and critical resources at every stage of their journey.

We proudly sponsored

the 2025 Gordon Research Conference on Neuroimmune Communication in Health and Disease — an internationally respected forum that brings together leading scientists to explore the cutting edge of neuroimmune interactions. Our sponsorship underscores our commitment to advancing foundational research, fostering global collaboration, and accelerating breakthroughs that can transform care for patients with complex neuroimmune conditions.

We’ve served and advocated alongside the

850+ clinicians

formally opted in to our Clinician Networks

Our NCATS Alliance membership

— a collaborative initiative that is part of the National Institutes of Health (NIH), positions us at the forefront of national efforts to bridge the gap between research and patient impact.
Participated in the

IACC-Patient Advocacy Coalition Initiative

supported by the CDC Foundation. We are proud to be elevating the voices of millions with infection-associated chronic conditions with a goal of better research, clinical care, and policy.

Honored
by Lucile Packard Children’s Hospital at Stanford in a publication about Neuroimmune Foundation’s partnership with Stanford.

Celebrated the
third anniversary
of the launch of our highly aclaimed Expert Consultation Panel
— an initiative launched to bring top-tier clinical insight to complex neuroimmune cases. Originally composed of eight leading experts, we have expanded to 12 distinguished members from institutions such as UCSF, Stanford, Harvard, and the NIH. The panel continues to elevate the standard of care and accelerate diagnostic clarity for patients nationwide.

For the seventh year in a row, we were awarded

Guidestar’s Platinum Seal of Transparency

an honor held by under 1% of nonprofits.

For the third year, exhibited at National Conference of State Legislatures

using this influential platform to educate policymakers on PANS/PANDAS, the complex challenges faced by affected families, and actionable policy solutions. Our continued presence underscores a commitment to shaping informed, compassionate legislation and driving systemic change at the state level.

Our PANS/PANDAS Awareness content reached over 7 million individuals on social media.

How funds were spent in 2025

Total Incoming Donations/Grants 2024: $379k  ·  Total Outgoing 2024: $366k
Percentages rounded to the nearest whole number

On the horizon!


Neuroimmune ECHO cohort two

The first Neuroimmune ECHO cohort wraps up June 24th! Our goal is to launch a new ECHO cohort each January, provided we have the financial support to do so.

Pilot of regional clinician education and networking cohorts

Many clinicians have stated the need to have a local network of other clinicians for referrals, to discuss complex cases, and to feel less alone in treating these complex conditions. Our goal is to launch a pilot in January 2026 to address these barriers that make it more difficult for clinicians to provide care to complex patients.

Neuroimmune Foundation at the National AAP Conference

The National AAP conference is one of the most influential gatherings in pediatric healthcare, and this year, Neuroimmune Foundation will be exhibiting to share free Continuing Education Opportunities and resources on PANS/PANDAS to thousands of physicians in attendance! This strategic move positions us to engage directly with leading clinicians, researchers, and advocates, expanding awareness of PANS/PANDAS on a national stage.

A new tool for patients and clinicians

We have developed a promising new assessment tool that is currently being studied for validity. This tool represents a significant advancement by providing a standardized method for comparing patient symptoms at two or more points in time. Whether tracking changes before and after treatment interventions, monitoring symptom patterns during flares versus remission, or establishing a healthy baseline, this tool will help patients, families, and clinicians better track symptoms across time.