COALITION FOR USHER SYNDROME RESEARCH

EIN 26-4560897 WESTFORD, MA

Browse the largest nonprofits in Massachusetts

Revenue 2025: $416,783
Expenses 2025: $360,200

Program services were 85.4% of total expenses calculated — Part IX's program-services column over total expenses, both as filed.

As filed

Subsection: 03
NTEE code: E86
Classification: 1200
Street: 9 CORNERSTONE SQ STE 400 PMB 224

These codes are the IRS's own and are shown exactly as filed. What each one means is in the Business Master File documentation (opens in a new tab).

Mission and programs · 2025

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.

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.

Expenses $307,473 · Grants $1,700 · Revenue $14,931

As filed on the 2025 return.

Officers and directors · 2025

As listed in Part VII of the 2025 return, in the order the filer printed them. Each return names its own; this is not a roster the organization keeps with us.

Krista VasiKRISTA VASI

EXECUTIVE DI

Total calculated

$93,682

From this org

$93,682

From related orgs

$0

Other

$0

Hours/week

40
Kathy AnamisisKATHY ANAMISIS

DIRECTOR

Total calculated

$0

Hours/week

1
Tara BowmanTARA BOWMAN

DIRECTOR

Total calculated

$0

Hours/week

1
Nancy CordermanNANCY CORDERMAN

DIRECTOR

Total calculated

$0

Hours/week

2
Sarah JordanSARAH JORDAN

DIRECTOR

Total calculated

$0

Hours/week

2
Steve MasonSTEVE MASON

TREASURER

Total calculated

$0

Hours/week

1
Jennifer J Lentz PhDJENNIFER J LENTZ PHD

DIRECTOR

Total calculated

$0

Hours/week

1
Monte Westerfield PhDMONTE WESTERFIELD PHD

DIRECTOR

Total calculated

$0

Hours/week

1
Danay TrestDANAY TREST

DIRECTOR

Total calculated

$0

Hours/week

1
Sarah TurnerSARAH TURNER

DIRECTOR

Total calculated

$0

Hours/week

1

Compensation is as filed in Part VII: reportable pay from this organization and from related organizations, other compensation, and hours per week. The total, marked calculated, is our sum of the three dollar columns, with a blank column counted as $0; the form itself has no total. On a Form 990-EZ the columns are Part IV's instead, and on a Form 990-PF Part VIII's — compensation, contributions to benefit plans, and expense account — and the total sums those. Earlier years are each on their own filing page.

Filings

2025

Revenue

$416,783

Expenses

$360,200

Contributions

$400,646

Grants paid

$1,700
2024

Revenue

$378,430

Expenses

$436,862

Contributions

$298,102

Grants paid

$0
2023

Revenue

$250,204

Expenses

$284,874

Contributions

$221,199

Grants paid

$0
2022

Revenue

$502,883

Expenses

$415,751

Contributions

$393,749

Grants paid

$404

Tax year	Revenue	Expenses	Contributions	Grants paid
2025	$416,783	$360,200	$400,646	$1,700
2024	$378,430	$436,862	$298,102	$0
2023	$250,204	$284,874	$221,199	$0
2022	$502,883	$415,751	$393,749	$404

The four totals the IRS asks for on Part I of the Form 990, as filed. A dash means the figure was not present on the return — not that it was zero.

Other returns filed

2021 · 990-EZ

Revenue

$189,377

Expenses

$191,898

Assets (EOY)

$197,279
2020 · 990

Revenue

$236,754

Expenses

$172,747

Assets (EOY)

$199,232
2019 · 990

Revenue

$280,060

Expenses

$269,821

Assets (EOY)

$135,663
2018 · 990

Revenue

$199,273

Expenses

$182,902

Assets (EOY)

$125,293
2017 · 990

Revenue

$234,881

Expenses

$290,326

Assets (EOY)

$120,146
2016 · 990

Revenue

$278,702

Expenses

$244,596

Assets (EOY)

$164,922
2015 · 990

Revenue

$169,727

Expenses

$126,684

Assets (EOY)

$130,698
2014 · 990

Revenue

$103,895

Expenses

$132,884

Assets (EOY)

$87,419
2013 · 990

Revenue

$15,154

Expenses

$94,413

Assets (EOY)

$118,015
2012 · 990

Revenue

not reported

Expenses

$24,756

Assets (EOY)

$194,537

Tax year	Form	Revenue	Expenses	Assets (EOY)
2021	990-EZ	$189,377	$191,898	$197,279
2020	990	$236,754	$172,747	$199,232
2019	990	$280,060	$269,821	$135,663
2018	990	$199,273	$182,902	$125,293
2017	990	$234,881	$290,326	$120,146
2016	990	$278,702	$244,596	$164,922
2015	990	$169,727	$126,684	$130,698
2014	990	$103,895	$132,884	$87,419
2013	990	$15,154	$94,413	$118,015
2012	990	not reported	$24,756	$194,537

Nonprofiteer parses Forms 990, 990-EZ and 990-PF, in a window of recent tax years. These returns are recorded from the IRS e-file index, so their figures were extracted by that index rather than read from the return here — treat them as a different source from the filings above, not as more of the same record. A dash means the index carries no figure; Form 990-T listings carry none at all. Showing the 10 most recent; the API carries the rest.

Form 990-N e-Postcard, tax year 2011

Tax period: 1 January 2011 to 31 December 2011
Principal officer: Mark Dunning
Mailing address: 1269 Main StreetConcord MA 01742
Website: http://www.usher-syndrome.org/

As filed, from the IRS e-Postcard file of 9 November 2026. The IRS publishes only each organization's most recent postcard, so earlier years are not shown. A 990-N carries no financial detail. The postcard also gives the principal officer's address, which is not shown here.

Grants made

No itemized grants to organizations. Schedule I is filed only by organizations that granted more than $5,000 to a recipient, so most filers have none.

Grants received

COMMUNITY FOUNDATION OF NEW JERSEY

$50,000

2024 RESEARCH OR PROFESSIONAL SOCIETIES
USHER SYNDROME SOCIETY INC

$20,000

2024 Research Usher Syndrome
DONOR ADVISED CHARITABLE GIVING

$18,950

2024 HEALTH
DONOR ADVISED CHARITABLE GIVING

$15,000

2022 HEALTH
GLOBAL GENES

$15,000

2023 MENTAL HEALTH GRANT
USHER SYNDROME SOCIETY INC

$15,000

2025 Research Usher Syndrome
DONOR ADVISED CHARITABLE GIVING

$15,000

2023 HEALTH
ALASKA COMMUNITY FOUNDATION

$14,246

2022 Operational Support
PAYPAL CHARITABLE GIVING FUND

$11,869

2024 GENERAL SUPPORT
AMERICAN ONLINE GIVING FOUNDATION INC

$8,010

2022 GENERAL SUPPORT

The 10 largest by cash amount. The API serves every itemized grant.

Other IRS files

Auto-Revocation List

Not listed. The IRS publishes this list for organizations whose exemption was automatically revoked for failing to file for three consecutive years.

Publication 78

Listed as of 11 November 2026, under deductibility PC.

These are two separate IRS files on two separate schedules, shown as published and not reconciled with each other. Neither is a statement about whether a contribution is deductible today: 19,245 organizations appear in Publication 78 while the IRS's own revocation file lists them as currently revoked, more than half of those revoked before 2019. Absence from Publication 78 is evidence of nothing, and presence is not evidence either. Verify current status with the IRS before relying on it.

What this page reflects

The registration facts above come from the IRS Business Master File published 9 November 2026 and read 9 November 2026, for every organization at once. Returns through tax year 2025, the newest we have parsed for this organization.