PLATINUM2023

AMERICAN EPILEPSY SOCIETY

Working towards a world without epilepsy

aka AES   |   Chicago, IL   |  www.aesnet.org

Mission

The Mission of the American Epilepsy Society is to advance research and education for professionals dedicated to the prevention, treatment and cure of epilepsy. As the leading multidisciplinary epilepsy professional organization, AES brings together a community of experts committed to excellence in medical knowledge, education and research dedicated to improving the live of people with epilepsy and to eradicating epilepsy and its consequences.

Ruling year info

1975

Executive Director

Ms. Eileen M Murray MM, CAE

Main address

135 S LaSalle Street Suite 2850

Chicago, IL 60603 USA

Show more contact info

EIN

04-6112600

NTEE code info

Epilepsy (G54)

Epilepsy Research (H54)

Professional Societies, Associations (Y03)

IRS filing requirement

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

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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

WORKING TOWARD A WORLD WITHOUT EPILEPSY Epilepsy is the most common and potentially devastating neurological disease that affects people across the lifespan. - 1 in 26 people will have epilepsy in their lifetime. - Seizures know no boundaries, striking any age, any socio-economic level, and any ethnicity. - Between 2.2 and 3 million Americans, including almost 400,000 children, live with epilepsy. Of those, one-third suffer treatment-resistant - seizures that do not respond to currently available medications. - In the United States, approximately 40% of epilepsy patients do not have access to expert and appropriate care.

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?

Research Grants

AES provides grants and mentoring to support basic, translational and clinical researchers, with a special emphasis on early career researchers.

Population(s) Served
Adults

AES is the premiere provider of medical education in the field of epilepsy, including certified medical education for physicians, nurses, and other clinicians; trainees and fellows in epilepsy; and the general clinical community

Population(s) Served
Adults

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.

Total dollar amount of grants awarded

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

Researchers

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

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 mission centers on sharing knowledge, fostering continuous learning, discovering and applying innovations, acting through partnerships, and supporting current and future generations of those focused on achieving our vision of eradicating epilepsy and its consequences. Education, research, clinical excellence, public education, and awareness—these initiatives all align in the service of this vision.

STRATEGIC GOAL #1: EDUCATION
AES is the leader in education about epilepsy and in career development for current and next generation epilepsy professionals.

STRATEGIC GOAL #2: RESEARCH
AES is a recognized leader in setting research direction (basic through clinical); supporting innovation, encouraging collaboration and developing the next generation of investigators.

STRATEGIC GOAL #3: BEST PRACTICES
AES will improve patient care through developing and facilitating implementation of best practices.

STRATEGIC GOAL #4: RAISE AWARENESS OF EPILEPSY
AES will take a leadership role in improving awareness of seizures, epilepsy and its comorbidities.

STRATEGIC GOAL #5: ORGANIZATIONAL EFFECTIVENESS
AES will continue to improve its financial sustainability and organizational effectiveness.

The AES brings together the full spectrum of professionals dedicated to advancing more effective epilepsy care, from scientists and patient advocates through health care providers. By working together to share knowledge and ideas, our members drive tangible improvements in patient care.

The AES makes possible connections between members across the professional epilepsy community, between research, academia, and practice, and with other healthcare and industry organizations to foster the relationships that will drive the advancements that will allow us to realize our vision of eradicating epilepsy.

The AES makes possible connections between members across the professional epilepsy community, between research, academia, and practice, and with other healthcare and industry organizations to foster the relationships that will drive the advancements that will allow us to realize our vision of eradicating epilepsy.

The AES continues to grow with the addition of 743 new members in 2017. Our members, who come from every state and 61 countries around the world, are committed to help prevent, treat, and ultimately eradicate epilepsy.

In 2017 AES devoted more than 25,000 hours in leadership, volunteer, and staff time to develop timely educational programs, resources, and publications that keep our members in the forefront of epilepsy science and practice.

The AES increased its grantmaking capacity in 2016-2017, with a focus on growing the research talent pipeline. We now lead the early career program formerly managed by the Epilepsy Foundation, funding basic and clinical projects that seek answers to treating and curing epilepsy.

In 2017, the AES took our commitment to quality to new a new level byactively leading in the development of new guidelines and creating useful tools for clinical practice.

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

    To identify and remedy poor client 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

  • 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 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

  • What challenges does the organization face when collecting feedback?

    It is difficult to get the people we serve to respond to requests for feedback

Financials

AMERICAN EPILEPSY SOCIETY
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Operations

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

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lock

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.

AMERICAN EPILEPSY SOCIETY

Board of directors
as of 01/19/2023
SOURCE: Self-reported by organization
Board chair

Manisha Patel

University of Colorado, Anschutz Medical Campus

Term: 2023 - 2023

William H Theodore

National Institutes of Health

Howard P Goodkin

University of Virginia

Fred A Lado

Northwell Health

Kevin E Chapman

Phoenix Children's Hospital

Nathalie Jette

Icahn School of Medicince at Mount Sinai

Jorge A Gonzalez-Martinez

University of Pittsburgh

Annapurna Poduri

Boston Children's Hospital

R. Edward Hogan

Washington University in St. Louis

Annapurna Poduri

Boston Children's Hospital

Kelly G. Knupp

University of Colorado

Viji Santhakumar

University of California Riverside

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 1/19/2023

Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.

Leadership

The organization's leader identifies as:

Race & ethnicity
Asian/Asian American
Gender identity
Female
Disability status
Person without a disability

Race & ethnicity

Gender identity

Transgender Identity

Sexual orientation

No data

Disability

Equity strategies

Last updated: 10/28/2022

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 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 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 use a vetting process to identify vendors and partners that share our commitment to race equity.
  • We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.
  • We help senior leadership understand how to be inclusive leaders with learning approaches that emphasize reflection, iteration, and adaptability.
  • We engage everyone, from the board to staff levels of the organization, in race equity work and ensure that individuals understand their roles in creating culture such that one’s race identity has no influence on how they fare within the organization.