Colorado · Nonprofit
GLOBAL DOWN SYNDROME FOUNDATION
GLOBAL DOWN SYNDROME FOUNDATION (Colorado) receives grants from 119 organizations whose IRS filings report $12,956,709 to it, the largest being THE ANNA AND JOHN J SIE FOUNDATION ($7,512,716). 65 of them have funded it in more than one year.
- Revenue FY2025
- $4.7M
- Funders on record
- 119
- Grants received
- $13M
- Net assets
- $7.3M
What Global Down Syndrome Foundation does
Mission
To significantly improve the lives of people with down syndrome through research, medical care, education and advocacy. An important part of this mission is to support the global affiliate organizations that we helped establish and continue to fundraise for. Global and our affiliates work together to elongate life and dramatically improve health outcomes to ensure people with the condition can reach their true potential. Global affiliates include: crnic institute for down syndrome, alzheimer's & cognition center, sie center for down syndrome, and global adult clinic. Another important part of our mission is to engage in government advocacy that leads to transformative increases in government funding for down syndrome research and medical care which in turn will create a pipeline of young talent dedicated to this population. Because of global's work, scientists are developing better methods to understand how the triplication leads to a much higher incidence of certain diseases (for exam
As stated on its FY2025 Form 990.
Programs
Research and clinical care: down syndrome is when a person is born with three copies of chromosome 21 instead of the usual two. Before global was established, down syndrome was the least funded genetic condition by the national institutes of health (nih) and very little was being done to increase research or create evidence-based medical care guidelines. -global established the first down syndrome research and medical care institute in our country - our affiliate, the crnic institute for down syndrome. -global established one of the largest down syndrome medical centers in the world serving 2,500+ children with down syndrome from 35 states and 11 countrys - our affiliate the sie center for down syndrome. -global successfully lobbied and advocated for the establishment of the trans-nih down syndrome research program called "include- and have led to the renaissance of down syndrome research today. -global successfully lobbied and advocated for the national institutes of aging to launch their longitudinal ad-ds biomarker grants. -global created the first evidenced-based global medical care guidelines for adults with down syndrome published in the journal of american medical journal…
$1,668,619 spentof which $627,200 as grants49% of program spendingOutreach, education, and conferences: global offers a variety of research and medical outreach meetings, workshops, webinars, educational programs, and classes designed to support and improve the lives of global 's self- advocates, family members and professionals serving our community. Many of our educational programs involve building skills, building self-esteem and fostering independence.
$1,736,681 spentof which $162,264 as grants$4,017 earned by the program51% of program spending
The 2 programs described on its FY2024 Form 990, listed largest first by expense. Program spending in total: $3,405,300.
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 2017 to 2018, from $6.3M to $7.1M (+13%).
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: 2020 4% · 2021 4%. Grants only. Government contracts and fees sit inside program revenue.
96% of GLOBAL DOWN SYNDROME FOUNDATION’s revenue is contributions — more reliant on donations than three-quarters of its peers (51% for the typical peer).
Surplus & reserves
Operating surplus or deficit each year, and months of liquidity in hand. 2 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.
Board chair
John J Sie
Chair
As listed on its FY2025 Form 990.
Who funds it, year by year
2017 → 2023: the base broadened from 19 funders to 53 funders, grant income rose $309k → $1.9M.
25 of 119 of your funders are donor-advised or pass-through sponsors (tagged DAF) — 17% 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 GLOBAL DOWN SYNDROME FOUNDATION’s funders (the co-funder graph). Top 30 of 119 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
GLOBAL DOWN SYNDROME FOUNDATION leans on a few funders — its largest provides 58% of grant income and the top three 66%; half comes from just 1 funder.
the vertical line marks half of all grant income — 1 funder to its left
Largest funder’s share by year: 2017 22% · 2018 29% · 2019 56% · 2020 57% · 2021 57% · 2022 52% · 2023 62% — 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
45% of GLOBAL DOWN SYNDROME FOUNDATION's funders are still giving 3 years after their first grant; 55% 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
86% of GLOBAL DOWN SYNDROME FOUNDATION's grant income comes from Colorado funders.
In-state vs out-of-state, by year
Funder states come from each funder’s own filing. $2.2M arriving through sponsors registered in 16 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
GLOBAL DOWN SYNDROME FOUNDATION holds deeper cash reserves than three-quarters of the 5,002 health nonprofits its size.
this organization peer median middle 50% of peers· 5,002 health nonprofits $1M–$10M, FY2025
Organizations like GLOBAL DOWN SYNDROME FOUNDATION
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 Colorado
Nationally
Read directly from this organization’s own Form 990, as neutral context.
Where the money goes
72% of spending goes to programs.
Governance
Public support
74%
Share of support from the public (Schedule A) — the basis for its public-charity status.
Footprint & structure
Files a return copy in 20 states
Part of a family of 1 related entity
- Anna and John J Sie Foundation · exempt
Screen this organization
A dated, signed PDF of the compliance screen for GLOBAL DOWN SYNDROME FOUNDATION: 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 GLOBAL DOWN SYNDROME FOUNDATION?
- GLOBAL DOWN SYNDROME FOUNDATION (Colorado) receives grants from 119 organizations whose IRS filings report $12,956,709 to it, the largest being THE ANNA AND JOHN J SIE FOUNDATION ($7,512,716). 65 of them have funded it in more than one year.
- How many funders does GLOBAL DOWN SYNDROME FOUNDATION have?
- IRS filings report 119 organizations giving $12,956,709 in grants to GLOBAL DOWN SYNDROME FOUNDATION, 65 of which have funded it in more than one year.
- Who is the largest funder of GLOBAL DOWN SYNDROME FOUNDATION?
- THE ANNA AND JOHN J SIE FOUNDATION is the largest funder on record, with $7,512,716 in grants. The full list of funders is on this page.
- How can an organization like GLOBAL DOWN SYNDROME FOUNDATION find more funders?
- Start with the funders already giving here, then look at the foundations that back similar organizations in Colorado. 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 119 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