CYSTINOSIS RESEARCH FOUNDATION

What Cystinosis Research Foundation does

The organization over time

Each line starts at 100 in 2018, so what you read is the shape rather than the size: 150 means half as much again as 2018, 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 2018 to 2019, from $9.1M to $9.7M (+6%).

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. 3 of the last 8 reported years ran a deficit.

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.

Who funds it, year by year

2017 → 2023: the base broadened from 17 funders to 19 funders, grant income fell $1.0M → $712k.

17 of 58 of your funders are donor-advised or pass-through sponsors (tagged DAF) — 39% 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 CYSTINOSIS RESEARCH FOUNDATION’s funders (the co-funder graph). Top 30 of 58 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

CYSTINOSIS RESEARCH FOUNDATION has a broad base — no single funder exceeds 16% of grant income, and it takes 4 funders to reach half.

47% 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 CYSTINOSIS RESEARCH FOUNDATION.

Largest funder’s share by year: 2017 42% · 2018 49% · 2019 35% · 2020 27% · 2021 30% · 2022 34% · 2023 40% — broadly stable.

“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

40% of CYSTINOSIS RESEARCH FOUNDATION's funders are still giving 3 years after their first grant; 62% 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

CYSTINOSIS RESEARCH FOUNDATION draws 77% of its grant income from funders outside California, across 19 states in all.

Funder states come from each funder’s own filing. $3.8M arriving through sponsors registered in 12 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.