Chordoma Foundation

Nonprofit profile at a glance

EIN
208423943
IRS 990 coverage
2010–2025
Forms available
Form 990 2025
Location
Durham, NC, USA
Phone
9198096779
Rating
69
Verdict
SUPPORTED
Rating confidence
Moderate
Sector
Cancer Research

Official website

Reported finances

Revenue
$13,413,691
Expenses
$6,132,279
Assets
$18,010,621
Liabilities
$2,960,618

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

Leadership & pay

21 people listed

Executive titles in this filing

  • JOSH SOMMER (EXECUTIVE DIRECTOR & PRESIDENT)

Highest reported compensation

  • KENNY BRIGHTON (HEAD OF PHILANTHROPY): $243,190 total reported compensation
  • DANIEL FREED (CHIEF SCIENTIFIC OFFICER): $231,547 total reported compensation
  • JOSH SOMMER (EXECUTIVE DIRECTOR & PRESIDENT): $200,560 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 mission of the chordoma foundation is to improve the lives of those affected by chordoma and lead the search for a cure.

What it reported doing in 2025

(patient services) to improve the lives of individuals affected by chordoma, we helped patients and their families find accurate information about chordoma and treatment options, overcome barriers to care, and get emotional support from peers. This included developing and distributing educational content, providing patient navigation services, hosting educational conferences, operating an online community forum for patients and families and providing financial assistance to individuals traveling to participate in clinical trials.

Operating model

Revenue model
Donor-supported. 95% of the money available for current operations came from contributions and gifts.
Distribution model
Hybrid. The nonprofit split its reported program spending across 60% for direct work, and 40% for grants.
  • Includes noncash contributions: Reported contributions include donated property or goods.

The verdict

SUPPORTED - The filed numbers largely add up and most voting board members are independent. A relatively small share of available resources goes toward mission work and the filing reports few safeguards for money sent abroad.

Rating breakdown

  • Financial Efficiency: 53
  • Transparency & Controls: 69
  • Accountability: 91
  • Sustainability: 70
  • Growth: 100

Detailed rating inputs

Financial Efficiency

  • Mission deployment rate: 39%; rating input score 39
  • Program expense ratio: 78.7%; rating input score 79
  • Fundraising efficiency: $15.41 raised per $1 spent on fundraising; rating input score 46; 46th percentile among comparable filings

Transparency & Controls

  • Consistency checks: 93.3%; rating input score 93; 16th percentile among comparable filings
  • Pay-setting controls: 3 of 6 controls in place; rating input score 50
    • Compensation committee: Missing
    • Independent consultant: Missing
    • Other Form 990s reviewed: Pass
    • Written employment contract: Missing
    • Compensation survey or study: Pass
    • Board or committee approval: Pass
  • Foreign activity oversight: 1 of 8 controls in place; rating input score 12
    • Claims monitoring procedures: Pass
    • Requires narrative reports: Fail
    • Conducts field audits: Fail
    • May suspend future funding: Fail
    • Requires financial reports: Fail
    • Conducts site visits: Fail
    • Requires grant agreements: Fail
    • May require repayment: Fail
  • Grant itemization coverage: 98.3%; rating input score 98; 40th percentile among comparable filings
  • Major donor itemization: Yes; rating input score 100
  • Related-party transparency: Limited

Accountability

  • Independent voting board: 84.6%; rating input score 85; 15th percentile among comparable filings
  • Governance controls: 9 of 9 controls in place; rating input score 100
    • Conflict-of-interest policy: Pass
    • Whistleblower policy: Pass
    • Document-retention policy: Pass
    • CEO compensation review process: Pass
    • Other executive compensation review process: Pass
    • Form 990 shared with the board: Pass
    • Board meeting minutes documented: Pass
    • Audit committee oversight: Pass
    • Independent financial-statement audit: Pass

Sustainability

  • Operating margin: 54.3%; rating input score 93; 93rd percentile among comparable filings
  • Total-asset coverage ratio: 2.94; rating input score 65; 65th percentile among comparable filings
  • Liabilities to assets ratio: 0.16; rating input score 56; 56th percentile among comparable filings
  • Officer compensation ratio: 22.4%; rating input score 4; 4th percentile among comparable filings

Growth

  • Program expense growth: 13.2% per year; rating input score 100; 77th percentile among comparable filings
  • Revenue growth: 15.2% per year; rating input score 100; 86th percentile among comparable filings
  • Asset growth: 15.9% per year; rating input score 100; 84th percentile among comparable filings

Details

  • Where the money goes: 39% of revenue deployed · 78.7% of spending went to programs
  • Governance: 11 of 13 board members independent · 9 of 9 filing controls reported
  • Programs: 2 filed program accomplishments · $4.8M in reported program spending
  • Leadership: top reported pay $243K · 21 people listed · 3 of 6 pay-setting controls reported
  • Highest-paid contractors: 2 contractors listed · $512K reported
  • Consistency: 36 of 38 current checks pass · 2 findings to review
  • Schedules: 9 filed schedules · includes major donors, foreign activity, grants, and executive pay
  • Filing history: 16 filing years from 2010 to 2025
  • Contacts: How to reach this organization
  • Money network: 14 filed money-flow records
  • Related organizations: 6 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.

  • Moderate — Financial Efficiency: Mission deployment rate scored 39/100.
  • High — Transparency & Controls: Foreign activity oversight: 7 of 8 not reported.
  • Moderate — Financial Efficiency: Fundraising efficiency scored 46/100.
  • High — Sustainability: Officer compensation ratio scored 4/100.
  • Review — Transparency & Controls: Domestic grant itemization did not reconcile in the filed values.
  • Review — Transparency & Controls: Foreign grant itemization did not reconcile in the filed values.
  • Review — Sustainability: Liabilities to assets ratio scored 56/100.