Usher 1F Collaborative Inc

Nonprofit profile at a glance

EIN
464309387
IRS 990 coverage
2015–2025
Forms available
Form 990 2025, Form 990-N 2013
Location
Newtonville, MA, USA
Phone
3392212743
Rating
83
Verdict
STRONG
Rating confidence
Moderate
Sector
Diseases of Specific Organ Research

Official website

Reported finances

Revenue
$743,572
Expenses
$885,485
Assets
$691,312
Liabilities
$55,407

Source: IRS Form 990. Selected filing: tax year 2025. Amounts in USD.

Leadership & pay

12 people listed

People named in this filing

  • Melissa Chaikof (Chair and Trustee)
  • Elliot Chaikof (Vice Chair and Trustee)
  • Frank Gentile (Treasurer and Trustee)

Selected names, not a complete roster or a statement of current roles. Open leadership details for the complete filed list.

Source: IRS Form 990. Selected filing: tax year 2025. Names and roles reflect this filing, not necessarily current officeholders.

Overview

Mission

To fund medical research to find an effective treatment to save or restore the vision of those affected with Usher Syndrome Type 1F.

What it reported doing in 2025

2025 Grants to Research Labs: Harvard Medical School, David Corey Lab: $320,000 Development of gene therapies for Usher 1F University of Oregon Institute of Neuroscience, Monte Westerfield Lab: $80,000 Testing existing drugs for repurposing for Usher 1F 2025 Grant for year 4 of RUSH1F, 4-year natural history study in partnership with Foundation Fighting Blindness: $200,000. 2026 is year 4 of 4. This study will provide critical data for a future clinical trial. $5000 awarded to Usher Syndroom, Netherlands, for support/sponsorship of international Usher syndrome scientific research conference Total payment to Unravel Biosciences to identify drugs for repurposing for Usher 1F: $45,610 with an additional $45,610 due early 2026 at conclusion of study. Total grants awarded in 2025: $350,610 Key Research advances realized in 2025: Harvard conducting further preclinical testing of mini-gene Harvard team published the following paper in peer-reviewed journal: Mini-Pcdh15b Gene Therapy Rescues Visual Deficits in a Zebrafish Model of Usher Syndrome Type 1F https://www.biorxiv.org/content/10.1101/2025.11.05.686814v1 2 more papers in progress from Harvard lab for publication in 2026 Corey lab is now testing gene therapy from The Salk Institute, Samuel Pfaff lab, and early results are exciting. Hired a consultant to take our mini-gene through the next steps to apply for a clinical trial. Agreement in progress. Will include with 2026 audit since its not yet signed.

Operating model

Revenue model
Donor-supported. 62% of the money available for current operations came from contributions and gifts.
Distribution model
Grant intermediary. The nonprofit sent 98% of its reported program spending out as grants.

The verdict

STRONG - A large share of available resources goes toward mission work and the filed numbers largely add up. Fundraising costs are high for each dollar raised and some filing-based governance responses are negative or unanswered.

Rating breakdown

  • Financial Efficiency: 81
  • Transparency & Controls: 90
  • Accountability: 88
  • Sustainability: 28
  • Growth: 100

Detailed rating inputs

Financial Efficiency

  • Mission deployment rate: 96%; rating input score 96
  • Program expense ratio: 80.5%; rating input score 81
  • Fundraising efficiency: $3.42 raised per $1 spent on fundraising; rating input score 10; 10th percentile among comparable filings

Transparency & Controls

  • Consistency checks: 93.3%; rating input score 93; 24th percentile among comparable filings
  • Pay-setting controls: Limited
  • Foreign activity oversight: Limited
  • Grant itemization coverage: 99.3%; rating input score 99; 52nd percentile among comparable filings
  • Major donor itemization: Yes; rating input score 100
  • Related-party transparency: Limited

Accountability

  • Independent voting board: 100%; rating input score 100; 64th percentile among comparable filings
  • Governance controls: 5 of 7 controls in place; rating input score 71
    • Conflict-of-interest policy: Pass
    • Whistleblower policy: Fail
    • Document-retention policy: Fail
    • CEO compensation review process: NotApplicable
    • Other executive compensation review process: NotApplicable
    • Form 990 shared with the board: Pass
    • Board meeting minutes documented: Pass
    • Audit committee oversight: Pass
    • Independent financial-statement audit: Pass

Sustainability

  • Operating margin: -19.1%; rating input score 7; 7th percentile among comparable filings
  • Total-asset coverage ratio: 0.78; rating input score 36; 36th percentile among comparable filings
  • Liabilities to assets ratio: 0.08; rating input score 38; 38th percentile among comparable filings
  • Officer compensation ratio: 0%; rating input score 78; 78th percentile among comparable filings

Growth

  • Program expense growth: 12% per year; rating input score 100; 64th percentile among comparable filings
  • Revenue growth: 7.5% per year; rating input score 100; 51st percentile among comparable filings
  • Asset growth: 10.7% per year; rating input score 100; 57th percentile among comparable filings

Details

  • Where the money goes: 96% of revenue deployed · 80.5% of spending went to programs
  • Governance: 12 of 12 board members independent · 5 of 7 filing controls reported
  • Programs: 1 filed program accomplishment · $713K in reported program spending
  • Leadership: top reported pay $0 · 12 people listed
  • Consistency: 28 of 29 current checks pass · 1 finding to review
  • Schedules: 6 filed schedules · includes major donors and grants
  • Filing history: 10 filing years from 2015 to 2025
  • Contacts: How to reach this organization
  • Money network: 5 filed money-flow records
  • Related organizations: 4 filed related-organization links
  • Grant readiness: Federal tax and exclusion status, award history, and grant-maker relationships.
  • People: Everyone the filings name, and which of them the filings identify by more than a name.
  • Staff and benefit plans: Retirement and health plans the organization files with the Department of Labor, and the people in them.

Key Signals

Signals prioritize questions for review. They are not findings of misconduct.

  • High — Financial Efficiency: Fundraising efficiency scored 10/100.
  • Review — Accountability: Governance controls: 2 of 7 not reported.
  • High — Sustainability: Operating margin scored 7/100.
  • Moderate — Sustainability: Total-asset coverage ratio scored 36/100.
  • Review — Transparency & Controls: Domestic grant itemization did not reconcile in the filed values.
  • Moderate — Sustainability: Liabilities to assets ratio scored 38/100.