SOTOS SYNDROME SUPPORT ASSOCIATION

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.

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.

Surplus & reserves

Operating surplus or deficit each year, and months of liquidity in hand. 1 of the last 5 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.

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.

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.