Massachusetts · Nonprofit
COALITION FOR USHER SYNDROME RESEARCH
COALITION FOR USHER SYNDROME RESEARCH (Massachusetts) receives grants from 24 organizations whose IRS filings report $387,400 to it, the largest being Usher Syndrome Society Inc ($85,000). 9 of them have funded it in more than one year, and 55% of the money arrives through donor-advised or pass-through sponsors rather than from an institution directly.
- Revenue FY2025
- $417k
- Funders on record
- 24
- Grants received
- $387k
- Net assets
- $237k
What Coalition for Usher Syndrome Research does
Mission
To raise awareness and accelerate research for the most common genetic cause of combined deafness and blindness, while providing information and support to individuals with usher syndrome.
As stated on its FY2025 Form 990.
Program
The organization raises awareness and accelerates research for the most common cause of combined deafness and blindnes, while providing information and support to individuals and families with usher syndrome. This is accomplished through their connections conference where attendees have the opportunity to learn the latest on developing treatments while connecting with other affected individuals and families. The organization provides information and resources through website, webinars, etc. The organization advocates for increased federal funding for research and helps collect data to accelerate research. The organization also connects others affected by usher syndrome to help provide a community form them and their families.
$307,473 spentof which $1,700 as grants$14,931 earned by the program100% of program spending
The program described on its FY2025 Form 990. Program spending in total: $307,473.
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 2021 to 2022, from $197k to $287k (+45%).
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: 2025 1%. Grants only. Government contracts and fees sit inside program revenue.
96% of COALITION FOR USHER SYNDROME RESEARCH’s revenue is contributions — more donation-reliant than the typical peer (82% for the typical peer).
Surplus & reserves
Operating surplus or deficit each year, and months of liquidity in hand. 4 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.
Who funds it, year by year
2017 → 2023: the base broadened from 3 funders to 6 funders, grant income rose $11k → $60k.
9 of 24 of your funders are donor-advised or pass-through sponsors (tagged DAF) — 55% 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 COALITION FOR USHER SYNDROME RESEARCH’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
COALITION FOR USHER SYNDROME RESEARCH has a broad base — no single funder exceeds 22% of grant income, and it takes 3 funders to reach half.
the vertical line marks half of all grant income — 3 funders to its left
86% 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 COALITION FOR USHER SYNDROME RESEARCH.
Largest funder’s share by year: 2017 52% · 2018 66% · 2019 46% · 2020 24% · 2021 63% · 2022 41% · 2023 33% — 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.
How long its funders stay
21% of COALITION FOR USHER SYNDROME RESEARCH's funders are still giving 3 years after their first grant; 38% 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
55% of COALITION FOR USHER SYNDROME RESEARCH'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 $174k that is directly attributable, 50% of it comes from funders outside Massachusetts, across 11 states.
In-state vs out-of-state, by year
Funder states come from each funder’s own filing. $214k arriving through sponsors registered in 9 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
COALITION FOR USHER SYNDROME RESEARCH runs a healthier operating margin than half of the 7,883 health nonprofits its size.
this organization peer median middle 50% of peers· 7,883 health nonprofits $100k–$1M, FY2025
Organizations like COALITION FOR USHER SYNDROME RESEARCH
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
85% of spending goes to programs.
Governance
Public support
87%
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 COALITION FOR USHER SYNDROME RESEARCH: 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 COALITION FOR USHER SYNDROME RESEARCH?
- COALITION FOR USHER SYNDROME RESEARCH (Massachusetts) receives grants from 24 organizations whose IRS filings report $387,400 to it, the largest being Usher Syndrome Society Inc ($85,000). 9 of them have funded it in more than one year, and 55% of the money arrives through donor-advised or pass-through sponsors rather than from an institution directly.
- How many funders does COALITION FOR USHER SYNDROME RESEARCH have?
- IRS filings report 24 organizations giving $387,400 in grants to COALITION FOR USHER SYNDROME RESEARCH, 9 of which have funded it in more than one year.
- Who is the largest funder of COALITION FOR USHER SYNDROME RESEARCH?
- Usher Syndrome Society Inc is the largest funder on record, with $85,000 in grants. The full list of funders is on this page.
- How can an organization like COALITION FOR USHER SYNDROME RESEARCH 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.
Play a game about who funds Coalition for Usher Syndrome Research →
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 24 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 14, 2026. What this page cannot tell you · view filing