Massachusetts · Nonprofit
Usher Syndrome Society Inc
Usher Syndrome Society Inc (Massachusetts) receives grants from 20 organizations whose IRS filings report $1,058,712 to it, the largest being Renaissance Charitable Foundation Inc ($350,000). 5 of them have funded it in more than one year.
- Revenue FY2025
- $1.3M
- Funders on record
- 20
- Grants received
- $1.1M
- Net assets
- $2.3M
What Usher Syndrome Society Inc does
Mission
To use the arts to create empathy in order to raise awareness and funding for Usher Syndrome to ultimately find a cure.
As stated on its FY2025 Form 990.
Program
In 2025, the Usher Syndrome Society continued its award-winning Every Second Counts campaign with a new commercial bringing total impressions to more than 500 million. The campaign returned to Times Square for a second time, featuring members of the Usher syndrome community and generating national coverage, including an ABC News segment highlighting the powerful story of a newly diagnosed family. Our awareness efforts also included a first-of-its-kind immersive exhibit in New York City attended by more than 200 guests, an event featuring a singer-songwriter sharing his experience of vision loss, and a traveling exhibit displayed in five building lobbies across Boston. Together, these initiatives helped generate the funding needed to award $763,000 for research, representing a 188% increase in research support from the prior year. The cutting edge PUSH research program funded by the Usher syndrome Society, reached major scientific milestones, with new data supporting a promising platform that may lead to treatments for certain forms of Usher syndrome.
$892,446 spentof which $767,343 as grants100% of program spending
The program described on its FY2025 Form 990. Program spending in total: $892,446.
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.
Balance sheet
Total assets and total liabilities at each year end, in dollars. The largest one-year move in total assets was 2023 to 2024, from $681k to $2.0M (+198%).
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 8 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.
Who funds it, year by year
2021 → 2023: the base broadened from 3 funders to 6 funders, grant income rose $21k → $59k.
5 of 20 of your funders are donor-advised or pass-through sponsors (tagged DAF) — 40% 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 Usher Syndrome Society Inc’s funders (the co-funder graph). Top 19 of 20 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
Usher Syndrome Society Inc leans on a few funders — its largest provides 33% of grant income and the top three 77%; half comes from just 2 funders.
the vertical line marks half of all grant income — 2 funders to its left
43% 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 Usher Syndrome Society Inc.
Largest funder’s share by year: 2021 95% · 2022 95% · 2023 43% — 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
Usher Syndrome Society Inc draws 96% of its grant income from funders outside Massachusetts, across 10 states in all.
In-state vs out-of-state, by year
Funder states come from each funder’s own filing. $427k arriving through sponsors registered in 5 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 Usher Syndrome Society Inc
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 Massachusetts
Nationally
Read directly from this organization’s own Form 990, as neutral context.
Where the money goes
88% of spending goes to programs.
Governance
Public support
98%
Share of support from the public (Schedule A) — the basis for its public-charity status.
Footprint & structure
Files a return copy in 1 state
Screen this organization
A dated, signed PDF of the compliance screen for Usher Syndrome Society Inc: 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 Usher Syndrome Society Inc?
- Usher Syndrome Society Inc (Massachusetts) receives grants from 20 organizations whose IRS filings report $1,058,712 to it, the largest being Renaissance Charitable Foundation Inc ($350,000). 5 of them have funded it in more than one year.
- How many funders does Usher Syndrome Society Inc have?
- IRS filings report 20 organizations giving $1,058,712 in grants to Usher Syndrome Society Inc, 5 of which have funded it in more than one year.
- Who is the largest funder of Usher Syndrome Society Inc?
- Renaissance Charitable Foundation Inc is the largest funder on record, with $350,000 in grants. The full list of funders is on this page.
- How can an organization like Usher Syndrome Society Inc find more funders?
- Start with the funders already giving here, then look at the foundations that back similar organizations in Massachusetts. 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 2018–2025), and the filings of 20 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