Illinois · Nonprofit
SOTOS SYNDROME SUPPORT ASSOCIATION
SOTOS SYNDROME SUPPORT ASSOCIATION (Illinois) receives grants from 7 organizations whose IRS filings report $72,364 to it, the largest being NETWORK FOR GOOD ($34,909). 5 of them have funded it in more than one year, and 99% of the money arrives through donor-advised or pass-through sponsors rather than from an institution directly.
- Revenue FY2025
- $109k
- Funders on record
- 7
- Grants received
- $72k
- Net assets
- $294k
What Sotos Syndrome Support Association does
Mission
Support and education for sotos syndrome families
As stated on its FY2025 Form 990-EZ.
Programs
Online registration for conference, website, newsletters, educational information to assist sotos syndrome families, friends, doctors, teachers, and professionals in dealing with the syndrome which are utilized by over 300 members during the year.
$38,264 spent100% of program spendingAmortization expense
The 2 programs described on its FY2025 Form 990-EZ. Program spending in total: $38,264.
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. The shaded band is where the middle 50% of its peers' revenue would sit, given their growth.
Balance sheet
Total assets at each year end, in dollars. The largest one-year move in total assets was 2024 to 2025, from $229k to $294k (+28%).
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.
38% of SOTOS SYNDROME SUPPORT ASSOCIATION’s revenue is contributions — about as donation-reliant as the typical peer (83% for the typical peer).
Surplus & reserves
Operating surplus or deficit each year, and months of liquidity in hand. 1 of the last 6 reported years ran a deficit.
Who funds it, year by year
2018 → 2023: the base held at 2 funders, grant income rose $7k → $9k.
4 of 7 of your funders are donor-advised or pass-through sponsors (tagged DAF) — 99% 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 SOTOS SYNDROME SUPPORT ASSOCIATION’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
SOTOS SYNDROME SUPPORT ASSOCIATION leans on a few funders — its largest provides 48% of grant income and the top three 95%; half comes from just 2 funders.
the vertical line marks half of all grant income — 2 funders to its left
99% 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 SOTOS SYNDROME SUPPORT ASSOCIATION.
Largest funder’s share by year: 2018 100% · 2019 100% · 2020 96% · 2021 87% · 2022 87% · 2023 92% — 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
99% of SOTOS SYNDROME SUPPORT ASSOCIATION'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 $641 that is directly attributable, 97% of it comes from funders outside Illinois, across 3 states.
In-state vs out-of-state, by year
Funder states come from each funder’s own filing. $72k arriving through sponsors registered in 4 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
SOTOS SYNDROME SUPPORT ASSOCIATION runs a healthier operating margin than three-quarters of the 8,464 health nonprofits its size.
this organization peer median middle 50% of peers· 8,464 health nonprofits $100k–$1M, FY2025
Organizations like SOTOS SYNDROME SUPPORT ASSOCIATION
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 Illinois
Nationally
Read directly from this organization’s own Form 990, as neutral context.
Public support
99%
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 SOTOS SYNDROME SUPPORT ASSOCIATION: 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 SOTOS SYNDROME SUPPORT ASSOCIATION?
- SOTOS SYNDROME SUPPORT ASSOCIATION (Illinois) receives grants from 7 organizations whose IRS filings report $72,364 to it, the largest being NETWORK FOR GOOD ($34,909). 5 of them have funded it in more than one year, and 99% of the money arrives through donor-advised or pass-through sponsors rather than from an institution directly.
- How many funders does SOTOS SYNDROME SUPPORT ASSOCIATION have?
- IRS filings report 7 organizations giving $72,364 in grants to SOTOS SYNDROME SUPPORT ASSOCIATION, 5 of which have funded it in more than one year.
- Who is the largest funder of SOTOS SYNDROME SUPPORT ASSOCIATION?
- NETWORK FOR GOOD is the largest funder on record, with $34,909 in grants. The full list of funders is on this page.
- How can an organization like SOTOS SYNDROME SUPPORT ASSOCIATION find more funders?
- Start with the funders already giving here, then look at the foundations that back similar organizations in Illinois. 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 Sotos Syndrome Support Association →
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 7 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