The Adenoid Cystic Carcinoma Research Foundation

Nonprofit profile at a glance

EIN
206745475
IRS 990 coverage
2012–2025
Forms available
Form 990 2025
Location
Needham, MA, USA
Phone
7812489699
Rating
73
Verdict
SUPPORTED
Rating confidence
Moderate
Sector
Fund Raising and/or Fund Distribution

Reported finances

Revenue
$1,159,582
Expenses
$1,221,810
Assets
$2,250,095
Liabilities
$80,682

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

Leadership & pay

10 people listed

Highest reported compensation

  • JEFFREY KAUFMAN (Executive Dir.): $150,000 total reported compensation
  • NICOLE SPARDY BURR (DIRECTOR OF RESEAR): $148,750 total reported compensation

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

Overview

Mission

The adenoid cyctic carcinoma research foundation (accrf) supports research into adenoid cystic carcinoma that will accelerate the development of improved therapies and a cure for the disease.

What it reported doing in 2025

Patient education: accrf provides multiple ways in which individuals with adenoid cystic carcinoma and their caregivers may learn about their patient journeys. By building community through its website, emails, social media, patient meetings webinars and other communications, the foundation provides knowledge about treatment options, supportive networks and hope for its patients.

Operating model

Revenue model
Donor-supported. 77% of the money available for current operations came from contributions and gifts.
Distribution model
Hybrid. The nonprofit split its reported program spending across 61% for direct work, and 39% for grants.

The verdict

SUPPORTED - A large share of available resources goes toward mission work and the filed numbers largely add up. The filing reports few safeguards for money sent abroad and some filing-based governance responses are negative or unanswered.

Rating breakdown

  • Financial Efficiency: 82
  • Transparency & Controls: 70
  • Accountability: 73
  • Sustainability: 34
  • Growth: 60

Detailed rating inputs

Financial Efficiency

  • Mission deployment rate: 88.8%; rating input score 89
  • Program expense ratio: 83.5%; rating input score 83
  • Fundraising efficiency: $13.36 raised per $1 spent on fundraising; rating input score 44; 44th percentile among comparable filings

Transparency & Controls

  • Consistency checks: 92.9%; rating input score 93; 22nd percentile among comparable filings
  • Pay-setting controls: Limited
  • Foreign activity oversight: 0 of 8 controls in place; rating input score 0
    • Claims monitoring procedures: Limited
    • Requires narrative reports: Limited
    • Conducts field audits: Limited
    • May suspend future funding: Limited
    • Requires financial reports: Limited
    • Conducts site visits: Limited
    • Requires grant agreements: Limited
    • May require repayment: Limited
  • Grant itemization coverage: 93.1%; rating input score 93; 44th percentile among comparable filings
  • Major donor itemization: Yes; rating input score 100
  • Related-party transparency: Limited

Accountability

  • Independent voting board: 77.8%; rating input score 78; 20th percentile among comparable filings
  • Governance controls: 6 of 9 controls in place; rating input score 67
    • Conflict-of-interest policy: Pass
    • Whistleblower policy: Fail
    • Document-retention policy: Fail
    • CEO compensation review process: Pass
    • Other executive compensation review process: Fail
    • Form 990 shared with the board: Pass
    • Board meeting minutes documented: Pass
    • Audit committee oversight: Pass
    • Independent financial-statement audit: Pass

Sustainability

  • Operating margin: -5.4%; rating input score 19; 19th percentile among comparable filings
  • Total-asset coverage ratio: 1.84; rating input score 62; 62nd percentile among comparable filings
  • Liabilities to assets ratio: 0.04; rating input score 47; 47th percentile among comparable filings
  • Officer compensation ratio: 24.5%; rating input score 12; 12th percentile among comparable filings

Growth

  • Program expense growth: -2.1% per year; rating input score 0; 11th percentile among comparable filings
  • Revenue growth: 0.8% per year; rating input score 100; 14th percentile among comparable filings
  • Asset growth: 1.3% per year; rating input score 100; 20th percentile among comparable filings

Details

  • Where the money goes: 88.8% of revenue deployed · 83.5% of spending went to programs
  • Governance: 7 of 9 board members independent · 6 of 9 filing controls reported
  • Programs: 2 filed program accomplishments · $1M in reported program spending
  • Leadership: top reported pay $150K · 10 people listed
  • Consistency: 24 of 25 current checks pass · 1 finding to review
  • Schedules: 6 filed schedules · includes major donors, foreign activity, and grants
  • Filing history: 14 filing years from 2012 to 2025
  • Contacts: How to reach this organization
  • Money network: 7 filed money-flow records
  • Related organizations: 5 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.

Key Signals

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

  • High — Transparency & Controls: Foreign activity oversight scored 0/100.
  • Review — Accountability: Governance controls: 3 of 9 not reported.
  • Moderate — Financial Efficiency: Fundraising efficiency scored 44/100.
  • High — Growth: Program expense growth scored 0/100.
  • High — Sustainability: Operating margin scored 19/100.
  • Review — Transparency & Controls: Domestic grant itemization did not reconcile in the filed values.
  • High — Sustainability: Officer compensation ratio scored 12/100.
  • Moderate — Sustainability: Liabilities to assets ratio scored 47/100.