Citizens United for Research in Epilepsy

Nonprofit profile at a glance

EIN
364253176
IRS 990 coverage
2012–2025
Forms available
Form 990 2025
Location
Chicago, IL, USA
Phone
3122551801
Rating
80
Verdict
STRONG
Rating confidence
Moderate
Sector
Fund Raising and/or Fund Distribution

Official website

Reported finances

Revenue
$4,989,172
Expenses
$5,529,185
Assets
$10,409,120
Liabilities
$3,714,249

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

Leadership & pay

24 people listed

Executive titles in this filing

  • Beth Dean (CEO)

Highest reported compensation

  • Beth Dean (CEO): $344,007 total reported compensation
  • Laura Lubbers (CSO): $343,883 total reported compensation
  • Alysha Biehl (Director of Development): $170,346 total reported compensation

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

Overview

Mission

To find a cure for epilepsy by promoting and funding patient focused research.

What it reported doing in 2025

Since its inception in 1998, CURE Epilepsy has raised more than 100 million to fund epilepsy research and other initiatives that will lead the way to cures for the epilepsies. CURE Epilepsy awards grants for novel research projects to prevent epilepsy related to pediatric epilepsy, post-traumatic epilepsy, treatment resistant epilepsies, sudden unexplained death in epilepsy SUDEP, and sleep and epilepsy advancing the search for a cure, eliminating treatment side effects, and reversing deficits caused by frequent seizures, CURE Epilepsy funds grants for young and established investigators and to date has awarded more than 300 grants in 19 countries around the world.

Operating model

Revenue model
Donor-supported. 91% of the money available for current operations came from contributions and gifts.
Distribution model
Hybrid. The nonprofit split its reported program spending across 49% for direct work, and 51% for grants.

The verdict

STRONG - 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 fundraising costs are high for each dollar raised.

Rating breakdown

  • Financial Efficiency: 84
  • Transparency & Controls: 78
  • Accountability: 95
  • Sustainability: 24
  • Growth: 60

Detailed rating inputs

Financial Efficiency

  • Mission deployment rate: 96.6%; rating input score 97
  • Program expense ratio: 81.3%; rating input score 81
  • Fundraising efficiency: $6.98 raised per $1 spent on fundraising; rating input score 24; 24th percentile among comparable filings

Transparency & Controls

  • Consistency checks: 94.1%; rating input score 94; 23rd percentile among comparable filings
  • Pay-setting controls: 5 of 6 controls in place; rating input score 83
    • Compensation committee: Pass
    • Independent consultant: Pass
    • Other Form 990s reviewed: Missing
    • Written employment contract: Pass
    • Compensation survey or study: Pass
    • Board or committee approval: Pass
  • Foreign activity oversight: 2 of 8 controls in place; rating input score 25
    • Claims monitoring procedures: Pass
    • Requires narrative reports: Pass
    • 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: 96%; rating input score 96; 36th 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; 63rd percentile among comparable filings
  • Governance controls: 8 of 9 controls in place; rating input score 89
    • Conflict-of-interest policy: Pass
    • Whistleblower policy: Pass
    • Document-retention policy: Pass
    • 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: -10.8%; rating input score 9; 9th percentile among comparable filings
  • Total-asset coverage ratio: 1.88; rating input score 55; 55th percentile among comparable filings
  • Liabilities to assets ratio: 0.36; rating input score 23; 23rd percentile among comparable filings
  • Officer compensation ratio: 27.2%; rating input score 9; 9th percentile among comparable filings

Growth

  • Program expense growth: -0% per year; rating input score 0; 12th percentile among comparable filings
  • Revenue growth: 1.3% per year; rating input score 100; 13th percentile among comparable filings
  • Asset growth: 0.8% per year; rating input score 100; 13th percentile among comparable filings

Details

  • Where the money goes: 96.6% of revenue deployed · 81.3% of spending went to programs
  • Governance: 16 of 16 board members independent · 8 of 9 filing controls reported
  • Programs: 2 filed program accomplishments · $4.5M in reported program spending
  • Leadership: top reported pay $344K · 24 people listed · 5 of 6 pay-setting controls reported
  • Consistency: 37 of 38 current checks pass · 1 finding to review
  • Schedules: 9 filed schedules · includes major donors, foreign activity, grants, and executive pay
  • Filing history: 14 filing years from 2012 to 2025
  • Contacts: How to reach this organization
  • Money network: 22 filed money-flow records
  • Related organizations: 14 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 — Transparency & Controls: Foreign activity oversight: 6 of 8 not reported.
  • High — Financial Efficiency: Fundraising efficiency scored 24/100.
  • High — Sustainability: Operating margin scored 9/100.
  • High — Growth: Program expense growth scored 0/100.
  • Review — Accountability: Governance controls: Other executive compensation review process not reported.
  • Review — Sustainability: Total-asset coverage ratio scored 55/100.
  • High — Sustainability: Officer compensation ratio scored 9/100.
  • High — Sustainability: Liabilities to assets ratio scored 23/100.
  • Review — Transparency & Controls: Domestic grant itemization did not reconcile in the filed values.