Epilepsy Foundation of America

Nonprofit profile at a glance

EIN
520856660
IRS 990 coverage
2014–2024
Forms available
Form 990 2024
Location
Bowie, MD, USA
Phone
8003321000
Rating
80
Verdict
STRONG
Rating confidence
Moderate
Sector
Health

Official website

Reported finances

Revenue
$16,178,770
Expenses
$18,974,202
Assets
$19,977,394
Liabilities
$2,086,893

Source: IRS Form 990. Selected filing: tax year 2024. Amounts in USD.

Leadership & pay

24 people listed

Executive titles in this filing

  • BERNICE LEE (CHIEF EXECUTIVE OFFICER)

Highest reported compensation

  • BERNICE LEE (CHIEF EXECUTIVE OFFICER): $481,358 total reported compensation
  • BRANDY FUREMAN (CHIEF OUTCOMES OFFICER): $299,735 total reported compensation
  • LAURA WEIDNER (CHIEF ADVOCACY AND GOVERNMENT RELATIONS OFFICER): $247,755 total reported compensation

Source: IRS Form 990. Selected filing: tax year 2024. Names and roles reflect this filing, not necessarily current officeholders.

Overview

Mission

To improve the lives of peoples affected by epilepsy through education, advocacy, research, and connection.

What it reported doing in 2024

Advocacy and services for individuals, families, and communities - designed to ensure that all people living with epilepsy and seizure disorders, and thier families and communities, receive the best possible services and care. The foundation develops nationwide programs available through its network of nearly fifty local epilepsy foundations and can also be found on epilepsy.com. Programs and initiatives focus on engaging parents, children and adults on improving their quality of life. The foundation also has programs dedicated to ending early death from epilepsy and improving overall wellness. The programs are designed to be culturally and ethnically diverse. The foundation and its grassroots volunteers across the country advocate at the federal and state levels to secure funding for epilepsy programs.

Operating model

Revenue model
Donor-supported. 74% of the money available for current operations came from contributions and gifts.
Distribution model
Direct operator. The filing allocates 96% of reported program-service expenses outside its grant, affiliate-payment, and member-benefit lines. This expense classification does not rule out separately announced grant awards.
  • Includes noncash contributions: Reported contributions include donated property or goods.

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 expenses are high relative to revenue.

Rating breakdown

  • Financial Efficiency: 78
  • Transparency & Controls: 77
  • Accountability: 100
  • Sustainability: 24
  • Growth: 100

Detailed rating inputs

Financial Efficiency

  • Mission deployment rate: 87.2%; rating input score 87
  • Program expense ratio: 76%; rating input score 76
  • Fundraising efficiency: $9.89 raised per $1 spent on fundraising; rating input score 38; 38th percentile among comparable filings

Transparency & Controls

  • Consistency checks: 94.1%; rating input score 94; 20th percentile among comparable filings
  • Pay-setting controls: 6 of 6 controls in place; rating input score 100
    • Compensation committee: Pass
    • Independent consultant: Pass
    • Other Form 990s reviewed: Pass
    • Written employment contract: Pass
    • 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: 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: 83.9%; rating input score 84; 17th 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; 66th 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: -17.3%; rating input score 6; 6th percentile among comparable filings
  • Total-asset coverage ratio: 1.05; rating input score 38; 38th percentile among comparable filings
  • Liabilities to assets ratio: 0.1; rating input score 73; 73rd percentile among comparable filings
  • Officer compensation ratio: 11.6%; rating input score 15; 15th percentile among comparable filings

Growth

  • Program expense growth: 1.9% per year; rating input score 100; 19th percentile among comparable filings
  • Revenue growth: 0.9% per year; rating input score 100; 12th percentile among comparable filings
  • Asset growth: 2.8% per year; rating input score 100; 21st percentile among comparable filings

Details

  • Where the money goes: 87.2% of revenue deployed · 76% of spending went to programs
  • Governance: 14 of 14 board members independent · 9 of 9 filing controls reported
  • Programs: 3 filed program accomplishments · $14.4M in reported program spending
  • Leadership: top reported pay $481K · 24 people listed · 6 of 6 pay-setting controls reported
  • Highest-paid contractors: 5 contractors listed · $1.4M reported
  • Consistency: 37 of 38 current checks pass · 1 finding to review
  • Schedules: 11 filed schedules · includes major donors, foreign activity, grants, and executive pay
  • Filing history: 11 filing years from 2014 to 2024
  • Contacts: How to reach this organization
  • Money network: 13 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.
  • 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: Fundraising efficiency scored 38/100.
  • High — Sustainability: Operating margin scored 6/100.
  • Moderate — Sustainability: Total-asset coverage ratio scored 38/100.
  • High — Sustainability: Officer compensation ratio scored 15/100.
  • Review — Transparency & Controls: Domestic grant itemization did not reconcile in the filed values.