North Carolina · Nonprofit
AUTOIMMUNE ENCEPHALITIS ALLIANCE INC
AUTOIMMUNE ENCEPHALITIS ALLIANCE INC (North Carolina) receives grants from 15 organizations whose IRS filings report $277,113 to it, the largest being HARRY & YVONNE LENART CHARITABLE FOUNDATION ($89,000). 6 of them have funded it in more than one year.
- Revenue FY2025
- $151k
- Funders on record
- 15
- Grants received
- $277k
- Net assets
- $71k
What Autoimmune Encephalitis Alliance Inc does
Mission
To support all members of the ae community so no one faces ae alone.
As stated on its FY2025 Form 990-EZ.
Programs
Program 1: physician support and educationthe autoimmune encephalitis alliance (aea) medical advisory board provides guidance to the aea's programs supporting physician education, research, and clinical care. The medical advisory board (mab) includes renowned experts on autoimmune encephalitis (ae) from a variety of key disciplines - neurology, rheumatology, and psychiatry and focuses specifically on clinical care and research efforts to the ae community. In addition to the mab, the aea's clinicians network continues to be a premier source worldwide for patients and caregivers seeking physicians who have experience treating ae. The physicians in our clinicians network include experts in the field of autoimmune encephalitis, and frequently participate in research, conduct clinical trial studies, and speak in national forums about this rare disease. The network is the largest national registry of physicians treating ae - a total of 401 clinicians participating by 2025 year end.the aea provider education series continues to provide engaging didactic presentations and interactive discussions to members of the aea clinicians network, the aea medical advisory board and neuroimmunology…
$61,869 spent41% of program spendingProgram 2: research - aea edward arditte community seed grant programthe aea edward arditte community seed grant program received 17 applications from 7 countries in 2025. After a rigorous review, the aea mab research committee proposed a single application to the aea board of directors for funding and approval. The proposed project was approved and funded for $10,000. The project has direct implications for patients and families living with ae. In may of 2025 the aea continued its signature fundraising effort, research network, to fund the aea edward arditte community seed grant program for ae research. Contributions raised in 2025 as well as recurring research contribution commitments through june 2026 will go to fund the 2026 seed grant awards chosen in june.
$20,342 spentof which $10,000 as grants14% of program spendingProgram 3: patient support, disease awareness and advocacyin 2025, 69 support groups were offered via zoom to support the ae community with a total of 613 attendees and 123 unique individuals. Two community support groups are offered each month and four audience specific groups - partners, individuals with ae, caregivers only and beginning again with ae. The audience specific groups allow participants to share more completely and openly the personal experiences and challenges unique to their specific group type. All five support groups are peer-led by ten volunteers. Each volunteer is either diagnosed with ae or a caregiver. These 5 types of support groups meet a total of 6-7 times per month and allow people living with ae to not only share about the rare disease impacting their lives but also provide a place that no one has to explain and question if anyone understands. These groups serve as a discussion laboratory for the development of future living with ae programs.as a rare disease patient organization, the aea partners with pharmaceutical organizations and diagnostic laboratories committed to improving solutions for diagnosis and treatment of autoimmune encephalitis. These…
$68,360 spent45% of program spending
The 3 programs described on its FY2025 Form 990-EZ. Program spending in total: $150,571.
The organization over time
Each line starts at 100 in 2017, so what you read is the shape rather than the size: 150 means half as much again as 2017, 50 means half. The number beside each label in the key is where it ended. The shaded band is where the middle 50% of its peers' revenue would sit, given their growth.
Balance sheet
Total assets and total liabilities at each year end, in dollars. The largest one-year move in total assets was 2018 to 2019, from $125k to $172k (+38%).
How it's funded, over time
Each bar is one year's revenue split into where it came from, and every bar is the same height — these are shares, not amounts, so a year that raised twice as much looks the same size. Hover a bar for the split.
Government-grant reliance: 2021 22%. Grants only. Government contracts and fees sit inside program revenue.
100% of AUTOIMMUNE ENCEPHALITIS ALLIANCE INC’s revenue is contributions — more reliant on donations than three-quarters of its peers (82% for the typical peer).
Surplus & reserves
Operating surplus or deficit each year, and months of liquidity in hand. 5 of the last 9 reported years ran a deficit.
reserve
Leadership and staff
The officers, directors, trustees and key employees listed on each return. Joined and no longer listed compare each filing with the year before, matching people by surname and first initial; a year after a gap, or a roster under three people, has no comparison.
Chief executive
Margaret Poe
Executive director
Board chair
Stanley Naides
Chair
As listed on its FY2025 Form 990-EZ.
Who funds it, year by year
2017 → 2023: the base narrowed from 5 funders to 4 funders, grant income fell $46k → $45k.
7 of 15 of your funders are donor-advised or pass-through sponsors (tagged DAF) — 40% of grant dollars received. That money is really individual donors directing a sponsor; the institutions to cultivate are the non-DAF funders.
From the IRS filings of AUTOIMMUNE ENCEPHALITIS ALLIANCE INC’s funders (the co-funder graph). Association, not causation. Trends are read to FY2023, the last fiscal year that has finished arriving. FY2024–FY2026 are still being filed and are shown unshaded; they do not move any figure on this page.
How concentrated its funding is
AUTOIMMUNE ENCEPHALITIS ALLIANCE INC leans on a few funders — its largest provides 32% of grant income and the top three 82%; half comes from just 2 funders.
the vertical line marks half of all grant income — 2 funders to its left
41% of the income these shares are computed over arrives through pass-through sponsors or from payers whose filings do not say what kind of payment it is. Concentration is still measured over all of it, because the money is real; what it does not support is a claim about how many institutions have chosen to fund AUTOIMMUNE ENCEPHALITIS ALLIANCE INC.
Largest funder’s share by year: 2017 37% · 2018 51% · 2019 56% · 2020 40% · 2021 39% · 2022 65% · 2023 51% — growing more concentrated.
“Effective funders” = inverse Herfindahl index (1 / Σ shareᵢ²) — the number of equal-sized funders that would give the same concentration. Trends are read to FY2023, the last fiscal year that has finished arriving. FY2024–FY2026 are still being filed and are shown unshaded; they do not move any figure on this page.
How long its funders stay
40% of AUTOIMMUNE ENCEPHALITIS ALLIANCE INC's funders are still giving 3 years after their first grant; 40% give in more than one year at all.
Share of funders still giving k years after their first recorded grant, pooled across every acquisition cohort. A funder counts as retained in a year only if it made a grant that year. Measured to FY2023, the last fiscal year that has finished arriving — a funder cannot be counted as lapsed in a year most filers have not reached.
Where its funders are
AUTOIMMUNE ENCEPHALITIS ALLIANCE INC draws 98% of its grant income from funders outside North Carolina, across 5 states in all.
In-state vs out-of-state, by year
Funder states come from each funder’s own filing. $112k arriving through sponsors registered in 6 states is excluded from the map and the split above: a sponsor holds money on a donor’s behalf, so its registered address would place those dollars somewhere no donor need ever have been. Trends are read to FY2023, the last fiscal year that has finished arriving. FY2024–FY2026 are still being filed and are shown unshaded; they do not move any figure on this page.
Against its field
AUTOIMMUNE ENCEPHALITIS ALLIANCE INC receives grants from 15 organizations whose IRS filings report $277k to it.
this organization peer median middle 50% of peers· 7,883 health nonprofits $100k–$1M, FY2025
Organizations like AUTOIMMUNE ENCEPHALITIS ALLIANCE INC
Organizations whose mission and program text most resemble this one, by semantic similarity over every organization in the US filings — the closest peers, and often the clearest route to shared or prospective funders.
In North Carolina
Nationally
Read directly from this organization’s own Form 990, as neutral context.
Public support
67%
Share of support from the public (Schedule A) — the basis for its public-charity status.
Footprint & structure
Files a return copy in 1 state
Screen this organization
A dated, signed PDF of the compliance screen for AUTOIMMUNE ENCEPHALITIS ALLIANCE INC: IRS status (Business Master File, Publication 78, auto-revocation), the OFAC sanctions lists, the Internal Revenue Bulletin, and California registration, with the Rev. Proc. 2018-32 §8.01 reliance elements stated element by element. Generated from the current files at the moment you download it.
Screens are triage, not determinations; a source that cannot be read reports not screened, never clear. Screen this nonprofit · How the screen works · on the API as GET /api/screening/{ein}?format=pdf
Questions and answers
- Who funds AUTOIMMUNE ENCEPHALITIS ALLIANCE INC?
- AUTOIMMUNE ENCEPHALITIS ALLIANCE INC (North Carolina) receives grants from 15 organizations whose IRS filings report $277,113 to it, the largest being HARRY & YVONNE LENART CHARITABLE FOUNDATION ($89,000). 6 of them have funded it in more than one year.
- How many funders does AUTOIMMUNE ENCEPHALITIS ALLIANCE INC have?
- IRS filings report 15 organizations giving $277,113 in grants to AUTOIMMUNE ENCEPHALITIS ALLIANCE INC, 6 of which have funded it in more than one year.
- Who is the largest funder of AUTOIMMUNE ENCEPHALITIS ALLIANCE INC?
- HARRY & YVONNE LENART CHARITABLE FOUNDATION is the largest funder on record, with $89,000 in grants. The full list of funders is on this page.
- How can an organization like AUTOIMMUNE ENCEPHALITIS ALLIANCE INC find more funders?
- Start with the funders already giving here, then look at the foundations that back similar organizations in North Carolina. The funding by cause and by state pages list the largest funders for a given area and how to approach them.
These figures are read directly from IRS Form 990 / 990-PF e-file XML: this organization’s own return for FY2025 (financials across 2017–2025), and the filings of 15 funders that report grants to it. “On record” means captured in the filings we have parsed — a funder that does not e-file, or whose grant detail is not itemized, will not appear. Filings run roughly 12–24 months behind. Trends on this page end at FY2023, the last fiscal year that has finished arriving; later years are shown and marked, and move no figure. Data on this page was exported October 14, 2026. What this page cannot tell you · view filing