Epilepsy Foundation of America HQ

End Epilepsy Together

aka Epilepsy Foundation   |   Bowie, MD   |  www.epilepsy.com

Mission

To lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives.

Ruling year info

1959

President and CEO

Laura Thrall

Main address

3540 Crain Hwy Ste 675

Bowie, MD 20716 USA

Show more contact info

EIN

52-0856660

NTEE code info

Epilepsy (G54)

Epilepsy (G54)

Human Service Organizations (P20)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Communication

Blog

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

Epilepsy is misunderstood, underfunded and under recognized, endangering the lives and well-being of the 3.4 million people in the U.S., and 65 million people around the world, living with active epilepsy. For 30 to 40 percent of people with epilepsy, there is no available treatment to control their seizures. For many, the constant fear of when a seizure will strike and the risk of injury and death because they cannot get to safety greatly diminishes their quality of life. Public misunderstanding about epilepsy causes social challenges like bullying, discrimination, and depression. One in 26 will be diagnosed with epilepsy in their lifetime. Each year, about 1 in 1,000 adults and 1 in 4,500 children with epilepsy die from sudden unexpected death in epilepsy (SUDEP). There are more people living with epilepsy than with autism spectrum disorders, Parkinson’s disease, multiple sclerosis and cerebral palsy, combined

Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

Advocacy and Services for Individuals, Families and Commities

The Epilepsy Foundation is on the front lines helping ensure all people living with epilepsy and seizures and their families and communities receive the best possible services and care. We develop Nationwide programs available through our network of over 50 local epilepsy foundations and can also be found on epilepsy.com. Programs and initiatives focus on engaging parents, children and independent adults on improving their quality of life. We also have programs dedicated to ending early death from epilepsy and improving overall wellness Our programs are designed to be culturally and ethnically diverse. The Foundation and its grassroots volunteers across the country advocate the federal and state level to secure funding for epilepsy programs

Population(s) Served
People with disabilities

The Epilepsy Foundation leads the fight to end Epilepsy by creating awareness through national media outreach with traditional and digital channels, including epilepsy.com and Endepilepsy.org. We raise awareness of seizure recognition and first aid emphasizing the importance of early and proper diagnosis, when to seek specialty care, and pursuit of wellness and best quality of life. We educate through engagement with media sources, partnerships with professional and government organizations, and through our direct mail program which serves the dual purpose of raising funds for the organization and increasing awareness of our cause. As a result in accordance with the financial accounting standards board guidelines, we allocate a portion of our direct mail costs to program.

Population(s) Served
People with diseases and illnesses

Bringing innovative new therapies in a time frame that matters is a driving force and key strategic priority for the foundation. Through the epilepsy therapy project, we accelerate development of innovative therapies, prevention, and cures for all forms of epilepsy, and address gaps in the research, and commercialization continuum. The Foundation's epilepsy learning healthcare system pilot network drives quality improvement and health services research to improve outcomes for people with epilepsy Other key initiatives include research to eradicate SUDEP, expanded patient registries for common and rare epilepsy network, support for promising and meritorious research grant and fellowship applicaitons..

Population(s) Served
People with diseases and illnesses

Where we work

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Number of website pageviews

This metric is no longer tracked.
Totals By Year
Related Program

Education and Awareness

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

For FY'21: 18M pageviews, 11.5M sessions, 8.5M unique users

Number of people trained

This metric is no longer tracked.
Totals By Year
Population(s) Served

Ethnic and racial groups, Teachers

Related Program

Education and Awareness

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Number of Facebook followers

This metric is no longer tracked.
Totals By Year
Related Program

Education and Awareness

Type of Metric

Outcome - describing the effects on people or issues

Direction of Success

Increasing

Number of policies formally introduced

This metric is no longer tracked.
Totals By Year
Related Program

Advocacy and Services for Individuals, Families and Commities

Type of Metric

Input - describing resources we use

Direction of Success

Holding steady

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

Our vision is a world without epilepsy; lives free from seizures. Our mission is to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives. We strive to increase awareness and change the conversation around epilepsy to end fear and discrimination; improve and save lives through care, advocacy, research and new therapies, and education; and mobilize everyone to take action

The Epilepsy Foundation’s approach is centered around care, advocacy, research, and education. The Foundation connects people to treatment, support and resources; leads advocacy efforts to improve access to care, secure federal funding, and safeguard disability rights; funds innovative research and the training of specialists; and educates the public about epilepsy and seizure first aid.

Our strength is built upon a network of nearly 50 local organizations throughout the United States and a digital reach that exceeds 8 million unique visitors to epilepsy.com each year where 20 million pages are viewed by an average of 34,000 daily users, as well as a social media reach exceeding 350,000 community members. The Foundation has fostered strong partnership to help fulfill its mission, including with the U.S. Centers for Disease Control and Prevention (CDC), other epilepsy and disability organizations, and corporate partners and philanthropists. The Foundation has created four specialty institutes to 1) train epilepsy specialists for underserved communities (Care & Cure); 2) promote innovation in research and new therapy development; 3) educate people living with epilepsy and medical professionals about sudden unexpected death in epilepsy (SUDEP) ; and 4) improve the overall quality of life for people living with epilepsy and their families through wellness.

The Epilepsy Foundation has funded $65 million for epilepsy research and supported 3,076 investigators and specialists in their early careers. Over the past 17 years, partnering with the CDC, the Foundation has helped to improve access to care, expanded its digital reach and online resources, and trained more than 500,000 school and community personnel in seizure recognition and first aid. Through its 24/7 Helpline, the Foundation has assisted more than 108,000 people in the past five years. Looking to the future, the Foundation is optimizing and growing our nationwide network, volunteers, partners, and technology. Three new initiatives are the expansion of the Walk to End Epilepsy to cities across the country; a nationwide awareness and education campaign, “Let’s Use Our Brains to End Epilepsy”; and the award of a $3 million grant to an international team of scientists, researchers, and interoperability experts who will evaluate biosensors to ultimately improve seizure prediction.

How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We demonstrated a willingness to learn more by reviewing resources about feedback practice.
done We shared information about our current feedback practices.
  • Who are the people you serve with your mission?

    The mission of the Epilepsy Foundation is to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives. The Epilepsy Foundation serves people with epilepsy, their caregivers as well as the medical and research community. For more than five decades, the Epilepsy Foundation and our network of partners have helped to: connect people to treatment, support and resources; fund innovative research and the training of specialists; and educate the public about epilepsy and seizure first aid.

  • How is your organization collecting feedback from the people you serve?

    Electronic surveys (by email, tablet, etc.), Case management notes, Constituent (client or resident, etc.) advisory committees,

  • How is your organization using feedback from the people you serve?

    To identify and remedy poor client service experiences, To identify bright spots and enhance positive service experiences, To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To identify where we are less inclusive or equitable across demographic groups, To strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals,

  • What significant change resulted from feedback?

    In early May 2022, the Epilepsy Foundation relaunched our website based on quantitative and qualitative feedback received from our community. Between July 2021 and December 2021, the Epilepsy Foundation conducted surveys, spoke with people with Epilepsy, caregivers, researchers and physicians to determine how best to provide meaningful information. From January 2022 and May 2022, a team of developers and content experts culled through thousands of pages on our existing website and developed specific journey focused tracts (highly searchable) to better serve our community. With over 800,000 unique visitors per month, the website is the key source of information for people with Epilepsy in the US (and around the world). The relaunched website will provide far better access to content.

  • With whom is the organization sharing feedback?

    The people we serve, Our staff, Our board, Our funders, Our community partners,

  • How has asking for feedback from the people you serve changed your relationship?

    The relaunched website is an excellent example of partnership where decisions on how to provide content was shifted to serve people with epilepsy (rather than those who authored the information).

  • Which of the following feedback practices does your organization routinely carry out?

    We collect feedback from the people we serve at least annually, We take steps to get feedback from marginalized or under-represented people, We aim to collect feedback from as many people we serve as possible, We take steps to ensure people feel comfortable being honest with us, We look for patterns in feedback based on demographics (e.g., race, age, gender, etc.), We look for patterns in feedback based on people’s interactions with us (e.g., site, frequency of service, etc.), We engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive, We tell the people who gave us feedback how we acted on their feedback, We ask the people who gave us feedback how well they think we responded,

  • What challenges does the organization face when collecting feedback?

    Staff find it hard to prioritize feedback collection and review due to lack of time,

Financials

Epilepsy Foundation of America
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Operations

The people, governance practices, and partners that make the organization tick.

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Connect with nonprofit leaders

Subscribe

Build relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.

  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.

Epilepsy Foundation of America

Board of directors
as of 05/25/2022
SOURCE: Self-reported by organization
Board chair

Mr. Brad Boyer

Jeffrey Parent

Gulf States Toyota

Robert Smith

Cynthia Hudson

CNN

Courtney Barton

Marriott International

Jerilee Beaudoin

Sunmark Credit Union

Camila Coelho

Camila Coelho Collection

Eli Corbett

Petal Card, Inc.

Frank Fischer

NeuroPace, Inc.

Stephanie Fokas

David Hawk

Hawk Investments

Roger Helman

H-M Company Commercial Laundry Equipment

Adam Kaller

Hansen Jacobson

Sarah Klein

Epilepsy Foundation of Colorado

Greg Mayes

Antios Therapeutics

James McAlpin

Bryan Cave Leighton Paisner LLP

Daniel Moore

LivaNova, PLC

David Moore

McFarland Clinic

Noah Richmond

verily Life Sciences

Ron Shimabuku

Kamehameha Schools

Laura Thrall

Epilepsy Foundation of America

Rebekkah Walker

Courtney Watson

Parsons Corporation

Howard Zwirn

TRC

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and education
    Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? Yes
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? Yes
  • Ethics and transparency
    Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? Yes

Organizational demographics

SOURCE: Self-reported; last updated 05/23/2022

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Female

Race & ethnicity

Gender identity

 

Sexual orientation

Disability

Equity strategies

Last updated: 05/23/2022

GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. Learn more

Data
  • We review compensation data across the organization (and by staff levels) to identify disparities by race.
  • We ask team members to identify racial disparities in their programs and / or portfolios.
  • We analyze disaggregated data and root causes of race disparities that impact the organization's programs, portfolios, and the populations served.
  • We disaggregate data to adjust programming goals to keep pace with changing needs of the communities we support.
  • We employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders.
  • We have long-term strategic plans and measurable goals for creating a culture such that one’s race identity has no influence on how they fare within the organization.
Policies and processes
  • We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.
  • We have community representation at the board level, either on the board itself or through a community advisory board.
  • We help senior leadership understand how to be inclusive leaders with learning approaches that emphasize reflection, iteration, and adaptability.