Usher Syndrome Society Inc logo

Usher Syndrome Society Inc

Foundation · Grantmaker Needham, MA EIN: 26-1577154 Website
People with disabilitiesPeople with diseases and illnessesHealthDiseases and conditions

To use the arts to create empathy in order to raise awareness and funding for Usher Syndrome to ultimately find a cure.

Key facts about Usher Syndrome Society Inc

EIN
26-1577154
Latest 990 filing
Form 990-PF, 2025
Annual giving (2025)
$615,000
Grants made (2025)
3
Average grant
$205,000
Median grant
$100,000
Total assets
$2,313,420
Primary geography
Massachusetts (84% of itemized 2025 grant dollars)
Next open deadline
October 24, 2026 (2026 USS Translational Research Grant)

Data from IRS Form 990-PF, 2025; updated September 2026.

Who Usher Syndrome Society Inc funds

By grant dollars, the top recipient states for Usher Syndrome Society Inc's 3 itemized 2025 grants were Massachusetts (84%) and Oregon (16%). None of its 3 grants with a stated purpose were described as general or operating support. Recurring purposes include "Research Usher Syndrome" (3 grants).

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Financial Overview

From 2025 IRS Form 990-PF · View filing

Total Assets

$2.3M

+13.8% YoY

Annual Giving

$615K

+132.1% YoY

Grant Count

3

+0.0% YoY

Avg Grant Size

$205K

+132.1% YoY

About Usher Syndrome Society Inc

Based on IRS filings

Usher Syndrome Society Inc is a nonprofit organization focused on People with disabilities, based in Needham, MA. IRS filing data is available from 2019 through 2025. As of 2025, the organization holds $2.3M in total assets. In 2025, it awarded 3 grants totaling $615K. Net investment income was $44K.

Focus Areas

People with disabilitiesPeople with diseases and illnessesHealthDiseases and conditions
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Geographic Focus

Where this funder awards grants

Grant Distribution by State

2states

Share of all 3 itemized 2025 grant dollars.

Cities

BostonEugeneWestford

Financial History

Multi-year comparison from IRS filings

Revenue
Expenses
Qualifying Distributions
Net Investment Income
$0$424K$847K$1M$2M2019202020212022202320242025
Metric202520242023
Total Assets$2,313,420$2,032,699$681,044
Revenue$1,294,589$1,540,380$499,989
Expenses$1,009,795$450,758$448,421
Qualifying Distributions———
Net Investment Income$44,024$17,979$10,586
Distributable Amount———

Data update history

When this profile's IRS filing data changed on Grantable

  1. Updated Form 990 for fiscal year 2024 (received by the IRS July 16, 2025)
  2. Updated Form 990 for fiscal year 2025 (received by the IRS March 27, 2026)

Giving Over Time

Total grant dollars and number of grants per year

$0$154K$308K$461K$615K0 grants20190 grants20200 grants20210 grants20220 grants20233 grants20243 grants2025

Grant Insights

How this funder distributes its grants

Top Recipients

Top 3 recipients in 2025

Childrens Hospital Boston: $500KChildrens Hospital Boston$500KUniversity of Oregon: $100KUniversity of Oregon$100KUsher Syndrome Coalition: $15KUsher Syndrome Coalition$15K

Grant Size Distribution

6 grants across all recorded years

2<$50K$50–100K3$100–250K$250–500K1$500K–1M$1–5M$5M+

Open Grants

1 open opportunity from Usher Syndrome Society Inc

Giving History

Grant recipients and amounts by year

Among its reported 2025 grants, the largest recipients include Childrens Hospital Boston ($500,000), University of Oregon ($100,000), Usher Syndrome Coalition ($15,000).

RecipientPurposeAmount
Childrens Hospital Boston Boston, MAResearch Usher Syndrome$500,000
University of Oregon Eugene, ORResearch Usher Syndrome$100,000
Usher Syndrome Coalition Westford, MAResearch Usher Syndrome$15,000

Leadership & Key People

Officers and directors from IRS filings

Compensation Overview

From 2022 IRS filing

Rebecca Alexander — Director: $3KRebecca AlexanderDirector$3K

From 2025 IRS filing

NameTitleHoursCompensation
Nancy CordermanPresident50—
David CordermanVice President5—
Alan PintoDirector5—
Rebecca AlexanderDirector5—
Tori BanuDirector1—
Peggy BorstDirector10—
Hannah CordermanDirector5—
Sophia BoccardDirector1—

Subject Areas

Focus areas based on grantmaking activity

People with disabilitiesPeople with diseases and illnessesHealthDiseases and conditions

Frequently Asked Questions

What is Usher Syndrome Society Inc?

Usher Syndrome Society Inc is a nonprofit organization focused on People with disabilities, based in Needham, MA. It holds $2.3M in total assets as of 2025.

How large is Usher Syndrome Society Inc?

As of 2025, Usher Syndrome Society Inc holds $2.3M in total assets with $1.3M in annual revenue. It awarded 3 grants totaling $615K in 2025.

Where does Usher Syndrome Society Inc operate?

Usher Syndrome Society Inc has awarded grants in Massachusetts, Oregon.

What size grants does Usher Syndrome Society Inc award?

In 2025, Usher Syndrome Society Inc awarded 3 grants totaling $615K — an average of about $205K per grant, based on its IRS Form 990 filings.

What is Usher Syndrome Society Inc's EIN?

Usher Syndrome Society Inc's EIN (Employer Identification Number) is 26-1577154. IRS Form 990 filing data is available on this page for 2019–2025.

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Data last updated September 2026. Sourced from IRS Form 990-PF filings.

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