Florida · Nonprofit
NEUROACANTHOCYTOSIS ADVOCACY USA INCORPORATED
NEUROACANTHOCYTOSIS ADVOCACY USA INCORPORATED (Florida) receives grants from 4 organizations whose IRS filings report $88,081 to it, the largest being FIDELITY INVESTMENTS CHARITABLE GIFT FUND ($59,750). 4 of them have funded it in more than one year, and 81% of the money arrives through donor-advised or pass-through sponsors rather than from an institution directly.
- Revenue FY2025
- $65k
- Funders on record
- 4
- Grants received
- $88k
- Net assets
- $94k
What Neuroacanthocytosis Advocacy USA Incorporated does
Mission
The primary purpose of this corporation is to operate exclusively for charitable purposes and in furtherance of such goals is authorized to do any or all activities which it is empowered to do under the Articles of Incorporation and Florida law. No activities will be allowed which would jeopardize the corporations tax-exempt status or otherwise be inconsistent with its classification as an organization described in sections 501 c3 of the Internal Revenue Code.The specific purposes of the corporation is to support patients with neuroacanthocytosis-related diseases and their caregivers to promote awareness of neuroacanthocytosis-related diseases and to support research aimed at alleviation of said diseases.
As stated on its FY2025 Form 990-EZ.
Programs
In 2025 we continued to distribute grant payments to the Icahn School of Medicine for a brain tissue research project called "Neuropathology of Neuroacanthocytosis." Both of the diseases this organization represents - VPS13A formerly called chorea-acanthocytosis and XK disease formerly called McLeod syndrome are ultra rare diseases with only a handful of patients in the USA. The brain study represents the first look at human brain tissue of patients who had the disease. These diseases are ultra-rare. XK disease has a 1:10,000,000 prevalence and VPS13A has a 1:1,000,000 prevalence worldwide. Research results have been published in the Parkinson and Movement Disorders Societys Movement Disorder journal.
$0 spentof which $37,500 as grantsWe supported the bi-annual International Symposium on Neuroacanthocytosis Diseases in Lausanne Switzerland which brought together patients families and caregivers researchers and clinicians from around the world updates on the latest research and also a program to benefit 15 patients and families who were able to attend https: naadvocacy.org symposia .
$0 spentof which $10,575 as grantsWe helped to fund an on-going research effort involving mice in Italy.
$0 spentof which $8,000 as grants
The 3 programs described on its FY2025 Form 990-EZ.
The organization over time
Each line starts at 100 in 2021, so what you read is the shape rather than the size: 150 means half as much again as 2021, 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 2022 to 2023, from $45k to $68k (+51%).
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.
100% of NEUROACANTHOCYTOSIS ADVOCACY USA INCORPORATED’s revenue is contributions — more donation-reliant than the typical peer (100% for the typical peer).
Surplus & reserves
Operating surplus or deficit each year, and months of liquidity in hand. 0 of the last 5 reported years ran a deficit.
Who funds it, year by year
2020 → 2023: the base broadened from 1 funder to 3 funders, grant income rose $4k → $15k.
3 of 4 of your funders are donor-advised or pass-through sponsors (tagged DAF) — 81% 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 NEUROACANTHOCYTOSIS ADVOCACY USA INCORPORATED’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
NEUROACANTHOCYTOSIS ADVOCACY USA INCORPORATED leans on a few funders — its largest provides 68% of grant income and the top three 100%; half comes from just 1 funder.
the vertical line marks half of all grant income — 1 funder to its left
81% 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 NEUROACANTHOCYTOSIS ADVOCACY USA INCORPORATED.
Largest funder’s share by year: 2020 100% · 2021 73% · 2022 73% · 2023 65% — diversifying over time.
“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.
Where its funders are
81% of NEUROACANTHOCYTOSIS ADVOCACY USA INCORPORATED's grant income arrives through donor-advised or pass-through sponsors, whose addresses record where the money is held rather than where the donor is. Of the $17k that is directly attributable, 100% of it comes from funders outside Florida, across 1 state.
In-state vs out-of-state, by year
Funder states come from each funder’s own filing. $71k arriving through sponsors registered in 3 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
NEUROACANTHOCYTOSIS ADVOCACY USA INCORPORATED runs a healthier operating margin than half of the 6,360 health nonprofits its size.
this organization peer median middle 50% of peers· 6,360 health nonprofits under $100k, FY2025
Organizations like NEUROACANTHOCYTOSIS ADVOCACY USA INCORPORATED
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 Florida
Nationally
Read directly from this organization’s own Form 990, as neutral context.
Public support
100%
Share of support from the public (Schedule A) — the basis for its public-charity status.
Screen this organization
A dated, signed PDF of the compliance screen for NEUROACANTHOCYTOSIS ADVOCACY USA INCORPORATED: 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 NEUROACANTHOCYTOSIS ADVOCACY USA INCORPORATED?
- NEUROACANTHOCYTOSIS ADVOCACY USA INCORPORATED (Florida) receives grants from 4 organizations whose IRS filings report $88,081 to it, the largest being FIDELITY INVESTMENTS CHARITABLE GIFT FUND ($59,750). 4 of them have funded it in more than one year, and 81% of the money arrives through donor-advised or pass-through sponsors rather than from an institution directly.
- How many funders does NEUROACANTHOCYTOSIS ADVOCACY USA INCORPORATED have?
- IRS filings report 4 organizations giving $88,081 in grants to NEUROACANTHOCYTOSIS ADVOCACY USA INCORPORATED, 4 of which have funded it in more than one year.
- Who is the largest funder of NEUROACANTHOCYTOSIS ADVOCACY USA INCORPORATED?
- FIDELITY INVESTMENTS CHARITABLE GIFT FUND is the largest funder on record, with $59,750 in grants. The full list of funders is on this page.
- How can an organization like NEUROACANTHOCYTOSIS ADVOCACY USA INCORPORATED find more funders?
- Start with the funders already giving here, then look at the foundations that back similar organizations in Florida. The funding by cause and by state pages list the largest funders for a given area and how to approach them.
Play a game about who funds Neuroacanthocytosis Advocacy USA →
These figures are read directly from IRS Form 990 / 990-PF e-file XML: this organization’s own return for FY2025 (financials across 2021–2025), and the filings of 4 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