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Coalition for Usher Syndrome Research

EIN 26-4560897 · Westford, MA

Public records show a registered, tax-exempt organization in good standing.

LegitimacyPassesRegistration and standingFinancial healthStrong93 out of 100GovernanceStrong91 out of 100Impact evidenceDescribes programsHow well its results are evidenced

What it says it does

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.

Income
$416,783
Spending
$360,200
Spent on programs
85%
Reserves
7.9 months of spending
Largest source of income
donations and private grants, 95%
Employees
3
Volunteers
100
Highest pay
$93,682, executive di

Source: Form 990 for the year ending December 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Financial health

Strong: 93 out of 100. Higher than 73% of charities in its peer group (health care, $250k to $1m).

  • Reserves

    28 of 35

    Spendable reserves would cover 7.9 months of spending.

  • Debt

    20 of 20

    It owes 1% of what it owns.

  • Living within its means

    15 of 15

    Income exceeded spending by 14% of income.

  • Income trend

    15 of 15

    Income rose 10% on the year before.

  • Spending floor

    15 of 15

    85% of spending went to programs and raising each dollar of donations cost 0 cents.

Source: Form 990 for the year ending December 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Governance

Strong: 91 out of 100. Higher than 72% of charities in its peer group (health care, $250k to $1m).

  • Independent board

    25 of 25

    9 of 10 voting board members are independent.

  • Conflict of interest policy

    15 of 15

    Has a written conflict of interest policy.

  • Whistleblower policy

    8 of 8

    Has a written whistleblower policy.

  • Record keeping policy

    7 of 7

    Has a written policy on keeping and destroying records.

  • Board minutes

    5 of 5

    Keeps minutes of board meetings.

  • Board sees the tax return

    10 of 10

    Gave the board a copy of this return before filing it.

  • Pay set independently

    5 of 5

    Sets its chief executive's pay through independent review and comparison.

  • Independent check of accounts

    6 of 15

    Its accounts were not audited or reviewed by an independent accountant.

  • No reported misuse

    10 of 10

    Reports no diversion of assets, excess benefits or loans to insiders.

Source: Form 990 for the year ending December 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Impact evidence

Describes programs. Its tax return describes what it does but we have found no measurable results in it.

Programs described in its return (1)
  1. $307,473 spent. 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.

Source: Form 990 for the year ending December 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate

Legitimacy checks

  1. Is it registered with the IRS? Passed.

    Listed in the IRS master file of tax-exempt organizations as a 501(c)(3) charitable organization.

    Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.

  2. Has the IRS revoked its tax-exempt status? Passed.

    Not on the IRS automatic revocation list.

    Source: Automatic revocation of exemption list, Internal Revenue Service, file dated October 13, 2026.

  3. Are donations tax-deductible? Passed.

    On the IRS list of organizations eligible to receive tax-deductible contributions.

    Source: Publication 78 data: organizations eligible for tax-deductible contributions, Internal Revenue Service, file dated October 13, 2026.

  4. Is it keeping up with its IRS filings? Passed.

    Most recent return on file covers the year ending December 2025.

    Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.

  5. How long has it been tax-exempt? Passed.

    Recognized by the IRS since July 2010.

    Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.

  6. Is it in good standing with state regulators? Passed.

    Not on California's list of charities barred from soliciting. Other states are not yet checked.

    Source: May Not Operate or Solicit for Charitable Purposes list, California Attorney General, Registry of Charities and Fundraisers, file dated October 21, 2026.

Ratings and checks are our reading of public records, using the published method. They are not a statement about anyone's honesty. If you work for this organization, you can send corrections or results, confirm you want gifts through Veridonate, or ask to be removed from giving.