Washington, D.C. · Nonprofit
NATIONAL DOWN SYNDROME SOCIETY
NATIONAL DOWN SYNDROME SOCIETY (Washington, D.C.) receives grants from 141 organizations whose IRS filings report $6,111,794 to it, the largest being ORANGE COUNTY COMMUNITY FOUNDATION ($1,636,509). 54 of them have funded it in more than one year, and 69% of the money arrives through donor-advised or pass-through sponsors rather than from an institution directly.
- Revenue FY2025
- $4.7M
- Funders on record
- 141
- Grants received
- $6.1M
- Net assets
- $12M
What National Down Syndrome Society does
Mission
The National Down Syndrome Society empowers individuals with Down syndrome and their families by driving policy change, providing resources, engaging with local communities, and shifting public perceptions.
As stated on its FY2025 Form 990.
Programs
Community engagement - see schedule o
$2,160,607 spentof which $148,872 as grants$214,995 earned by the program47% of program spendingResources and support - see schedule o
$1,340,009 spentof which $17,002 as grants$65,950 earned by the program29% of program spendingAdvocacy and public policy - see schedule o
$1,093,316 spentof which $6,151 as grants24% of program spendingNational buddy walk
$155,250 earned by the program
The 4 programs described on its FY2024 Form 990, listed largest first by expense. Program spending in total: $4,593,932.
The organization over time
Each line starts at 100 in 2020, so what you read is the shape rather than the size: 150 means half as much again as 2020, 50 means half. The number beside each label in the key is where it ended.
Balance sheet
Total assets and total liabilities at each year end, in dollars. The largest one-year move in total assets was 2020 to 2021, from $12M to $15M (+23%).
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 6% · 2022 6%. Grants only. Government contracts and fees sit inside program revenue.
Surplus & reserves
Operating surplus or deficit each year, and months of liquidity in hand. 3 of the last 6 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
Kandi Pickard
President & CEO
Board chair
Carlo P Frappolli
Chairman
As listed on its FY2025 Form 990.
Who funds it, year by year
2017 → 2023: the base broadened from 29 funders to 52 funders, grant income rose $320k → $681k.
20 of 141 of your funders are donor-advised or pass-through sponsors (tagged DAF) — 69% 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 NATIONAL DOWN SYNDROME SOCIETY’s funders (the co-funder graph). Top 30 of 141 funders by total. 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
NATIONAL DOWN SYNDROME SOCIETY has a broad base — no single funder exceeds 27% of grant income, and it takes 4 funders to reach half.
the vertical line marks half of all grant income — 4 funders to its left
79% 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 NATIONAL DOWN SYNDROME SOCIETY.
Largest funder’s share by year: 2017 27% · 2018 50% · 2019 20% · 2020 20% · 2021 18% · 2022 19% · 2023 13% — 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.
How long its funders stay
26% of NATIONAL DOWN SYNDROME SOCIETY's funders are still giving 3 years after their first grant; 38% 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
69% of NATIONAL DOWN SYNDROME SOCIETY'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 $1.9M that is directly attributable, 96% of it comes from funders outside Washington, D.C., across 28 states.
In-state vs out-of-state, by year
Funder states come from each funder’s own filing. $4.2M arriving through sponsors registered in 14 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.
Organizations like NATIONAL DOWN SYNDROME SOCIETY
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 Washington, D.C.
Nationally
Read directly from this organization’s own Form 990, as neutral context.
Where the money goes
80% of spending goes to programs.
Governance
Public support
71%
Share of support from the public (Schedule A) — the basis for its public-charity status.
Footprint & structure
Files a return copy in 38 states
Screen this organization
A dated, signed PDF of the compliance screen for NATIONAL DOWN SYNDROME SOCIETY: 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 NATIONAL DOWN SYNDROME SOCIETY?
- NATIONAL DOWN SYNDROME SOCIETY (Washington, D.C.) receives grants from 141 organizations whose IRS filings report $6,111,794 to it, the largest being ORANGE COUNTY COMMUNITY FOUNDATION ($1,636,509). 54 of them have funded it in more than one year, and 69% of the money arrives through donor-advised or pass-through sponsors rather than from an institution directly.
- How many funders does NATIONAL DOWN SYNDROME SOCIETY have?
- IRS filings report 141 organizations giving $6,111,794 in grants to NATIONAL DOWN SYNDROME SOCIETY, 54 of which have funded it in more than one year.
- Who is the largest funder of NATIONAL DOWN SYNDROME SOCIETY?
- ORANGE COUNTY COMMUNITY FOUNDATION is the largest funder on record, with $1,636,509 in grants. The full list of funders is on this page.
- How can an organization like NATIONAL DOWN SYNDROME SOCIETY find more funders?
- Start with the funders already giving here, then look at the foundations that back similar organizations in Washington, D.C.. 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 2020–2025), and the filings of 141 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 22, 2026. What this page cannot tell you · view filing