PLATINUM2023

Citizens United for Research in Epilepsy

Through research there is hope

aka CURE Epilepsy   |   Chicago, IL   |  www.CUREepilepsy.org

Mission

CURE's mission is to find a cure for epilepsy, by promoting and funding patient-focused research.

Ruling year info

1999

Chief Executive Officer

Beth Dean

Founder

Susan Axelrod

Main address

420 N Wabash Ave Suite 650

Chicago, IL 60611 USA

Show more contact info

EIN

36-4253176

NTEE code info

Epilepsy Research (H54)

IRS filing requirement

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

Sign in or create an account to view Form(s) 990 for 2022, 2021 and 2020.
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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

For the 65 million people worldwide with epilepsy, progress is unacceptably slow. Children with uncontrollable seizures frequently face a lifetime of challenges including misunderstandings about epilepsy, discrimination, and other epilepsy-related problems. Mortality rates among people with epilepsy are three times the rate of the general population, and sudden death rates are more than twenty times higher. THE NEED FOR MORE RESEARCH IS CLEAR: One in twenty-six Americans will develop epilepsy in their lifetime. An estimated 3.4 million Americans and 65 million people worldwide currently live with epilepsy. Each year at least 150,000 people are diagnosed with epilepsy. According to recent estimates, in up to 50% of patients diagnosed with epilepsy, the cause is unknown. Epilepsy affects more people than autism spectrum disorder, multiple sclerosis, cerebral palsy, and Parkinson’s combined – yet receives fewer federal dollars per patient than each of these.

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?

CURE Research Grants

Investigator-initiated grants are the cornerstone of CURE’s research portfolio. Since our inception in 1998, we have funded more than 270+ grants in 17 countries. CURE awards grants for novel research projects that address finding cures for epilepsy and the goal of “no seizures, no side-effects.” Grants awarded to CURE researchers have resulted in proof of concept studies to test potential new treatments in patients—resulting in improvements in some, and setting the stage for future research for others.

Population(s) Served
People with diseases and illnesses

With the support of the Nussenbaum-Vogelstein family, the goal of this program is to expose young researchers and clinicians to exciting epilepsy research, and to provide opportunities for young investigators to interact with a senior level epilepsy researcher.

Population(s) Served
Academics
Students

CURE is proud to promote conferences taking place globally in the epilepsy and neurology fields. We are dedicated to engaging the research community, promoting collaboration and increasing epilepsy’s visibility with the goal of finding a cure.

Population(s) Served
Adults
Academics

Made possible by a generous contribution from the John and Barbara Vogelstein Foundation, Epilepsy Genetics Initiative (EGI), a Signature Program of CURE, is advancing our understanding of the genetic causes of epilepsy. The vision is to improve the ways we prevent, diagnose, and treat this devastating disease. EGI is an initiative created to bridge the gap between people with epilepsy, clinicians, and researchers, and to advance precision medicine in epilepsy. EGI’s centralized database holds the genetic (exome) data of people with epilepsy, and the data will be analyzed and reanalyzed until the cause of the patient’s epilepsy is found. Findings will then be reported to the patient’s treating physician and the data will be made available to advance cutting-edge research projects.

Population(s) Served
People with diseases and illnesses

The Infantile Spasms (IS) Initiative is advancing disease-modifying therapies by focusing on the underlying pathology of this syndrome that affects our youngest, most vulnerable population. CURE has awarded more than $4.1 million to help identify the cause, improve quality of life, decrease cognitive impact, and reduce adverse side effects from current treatments.

Population(s) Served
People with diseases and illnesses
Infants and toddlers

Sudden Unexpected Death in Epilepsy (SUDEP) is a risk to many individuals living with epilepsy and the second most common cause of sudden death in children. CURE galvanized the epilepsy research community with more than $4.3 million in grants to identify risk factors for this devastating consequence of epilepsy. Our goal is to increase awareness while decreasing incidents and saving lives.

Population(s) Served
People with diseases and illnesses

With the help of a $10 million grant from the U.S. Department of Defense, CURE is creating a new, first-of-its-kind research program and focus on post-traumatic epilepsy (PTE) as a result of traumatic brain injury (TBI). This unprecedented, multi-disciplinary program will devote significant resources over five years toward research which will benefit veterans who have been affected by TBI and resulting PTE. The goal of CURE’s new initiative is to establish a multi-center, multi-investigator research team that will rapidly translate patient-relevant findings at the molecular, cellular, and systems level into novel therapies to prevent the development of epilepsy from TBI. This ‘team science’ model will establish a foundation of knowledge regarding what types of injury increase risk to development of epilepsy and how it is best studied in the laboratory.

Population(s) Served
People with diseases and illnesses
Veterans

Day of Science is a free, educational and networking opportunity for patients, families, medical professionals, researchers and all those touched by or interested in learning more about epilepsy. Day of Science includes: panel of experts sharing the latest in epilepsy research and what it means for patients and families; information on cutting-edge therapies and treatments; the opportunity to engage with other families in the epilepsy community; and Q&A sessions.

Population(s) Served
People with diseases and illnesses
Families

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 dollars received in contributions

This metric is no longer tracked.
Totals By Year
Type of Metric

Input - describing resources we use

Direction of Success

Increasing

Context Notes

This metric measures the total contributions and special event proceeds we receive annually. It is reported in our statement of activities and changes in net assets within our annual report.

Number of research studies conducted

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

CURE Research Grants

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

This metric measures the dollar value of Epilepsy Research Grants we award annually. The dollars are reported as part of our Statement of Functional Expenses in our Annual Report

Number of rallies/events/conferences/lectures held to further mission

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

CURE Conference Support

Type of Metric

Output - describing our activities and reach

Direction of Success

Holding steady

Context Notes

This metric measures our investment in funding, attending and driving program related Epilepsy Events. It is tied to Program Dollars spent on conferences, meetings and travel

Number of people on the organization's email list

This metric is no longer tracked.
Totals By Year
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
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 is to find a cure for epilepsy, by promoting and funding patient-focused research.

At CURE Epilepsy, we’re researching every day for those living with epilepsy. As the only nonprofit organization solely focused on epilepsy research in the US, we’ve spent the last two decades seeking to understand the underlying causes of this condition, uncover promising therapies, and ultimately find a cure. The road is long, and we get closer with every day, every scientific breakthrough, and every gesture of support from our community.

Experienced & passionate fund-raising: CURE Epilepsy has a dedicated Development Team passionate about raising the funds we need to feed our many epilepsy focused program investments. The team cares about our mission and enthusiastically manages appeals, major and local events and is actively seeking major individual, corporate and foundation major donations.
Driving Awareness: CURE Epilepsy manages a multi-faceted website that provides critical information and opportunities to those suffering through and managing Epilepsy. CURE Epilepsy organizes numerous Epilepsy Seminars and Webinars on epilepsy topics of interest that are also of vital importance to our constituents.
Research Conference Support: CURE Epilepsy is a willing sponsor and participant in numerous epilepsy focused scientific conferences each year. Our support enables epilepsy researchers to gather, share learning and build scientific enthusiasm for curing epilepsy.
Investing in and over-seeing Research: CURE Epilepsy has a dedicated group of Researchers who manage multiple epilepsy research grant cycles annually. These cycles target the highest quality epilepsy research opportunities identified by both junior and highly experienced researchers. Our research program is cutting-edge, dynamic and responsive to new scientific opportunities and directions through both investigator-initiated grants and highly unprecedented scientific programs and initiatives. Once research awards are granted, we closely monitor and support each research project to help ensure they are successfully and efficiently completed.

Since its inception in 1998, CURE has raised more than $90 million to fund epilepsy research and other initiatives that will lead the way to cures for epilepsy. To date, CURE's research has awarded more than 285 cutting-edge epilepsy projects in 18 countries around the world. CURE has led a dramatic shift in the epilepsy research community from simply treating seizures to enhancing understanding of underlying mechanisms and causes, so that cures and preventative strategies can be found.

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 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 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 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 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 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

  • What challenges does the organization face when collecting feedback?

    We don't have any major challenges to collecting feedback

Financials

Citizens United for Research in Epilepsy
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Operations

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

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  • Analyze a variety of pre-calculated financial metrics
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  • Compare nonprofit financials to similar organizations

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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.

Citizens United for Research in Epilepsy

Board of directors
as of 08/22/2023
SOURCE: Self-reported by organization
Board chair

Kelly Cervantes

Steve Austin

Shalee Cunneen

Tina Sacks

Matt Schneider

Kim Borden

Michael Axelrod

Lisa Cotton

Marilynn Kelly Gardner

David Reifman

Carrie Garman

Kathy McKenna

Hannah Whitten

Justin Gover

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 8/22/2023

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
White/Caucasian/European
Gender identity
Female
Sexual orientation
Decline to state
Disability status
Decline to state

The organization's co-leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Female
Sexual orientation
Decline to state
Disability status
Decline to state

Race & ethnicity

No data

Gender identity

Transgender Identity

Sexual orientation

No data

Disability

No data

Equity strategies

Last updated: 08/22/2023

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 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 measure and then disaggregate job satisfaction and retention data by race, function, level, and/or team.
  • 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.