Our Mission

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

Research will Lead us to CURE Epilepsy

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.


  • 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 multiple sclerosis, cerebral palsy, Parkinson’s disease, and Amyotrophic Lateral Sclerosis (ALS) combined – yet receives fewer federal dollars per patient than each of these.

CURE Epilepsy Report

Scientific research is our greatest hope for discovering the cures for epilepsy. In our impact reports, explore how CURE Epilepsy and our wonderful community have made strides in epilepsy research to drive science forward.

Impact Report


  • 1998

    Citizen's United for Research in Epilepsy (CURE) founded by Susan Axelrod and other parents searching for answers to help their children impacted by epilepsy. The pioneers had a goal, drive epilepsy research to find a cure for this devastating condition.

  • 2000

    CURE is instrumental in establishing the first-ever epilepsy research benchmarks by the National Institute of Neurological Disorders and Stroke (NINDS). This is the first time NINDS holds a conference about curing epilepsy.

  • 2000

    CURE funds its first two grants.

  • 2002

    CURE takes up research in acquired epilepsy by funding a study on the role inflammation may play. Study led by Dr. Annamaria Vezzani, kicking off her influential career in epilepsy research.

  • 2004

    CURE's Sudden Unexpected Death in Epilepsy (SUDEP) Initiative breaks new ground as the first private research program dedicated to investigating SUDEP and its prevention.

    Friend of CURE, Jeanne Donalty, was key in driving this initiative after her son Christopher passed away due to SUDEP at the age of 20.

  • 2004

    CURE launches SUDEP Signature Research Program and funds first SUDEP research grant to Carl L. Faingold, PhD.

  • 2005

    To increase SUDEP awareness in the medical community, CURE and the American Epilepsy Society (AES) co-host the first SUDEP workshop at the annual AES meeting.

    Before our involvement, physicians often didn't warn patients and caregivers about SUDEP. This workshop was a step toward broader information and patient knowledge.

  • 2006

    CURE grantee Dr. Walter St. John shows that seizures can profoundly depress respiratory function in an animal model and potentially account for SUDEP.

  • 2006

    A CURE funded study provides evidence that Prozac® (fluoxetine) can reduce respiratory arrest in SUDEP-prone mice, paving the way for further research in this field by Dr. Faingold and others.

  • 2007

    CURE starts its first multi-year, multi-investigator research program with funding from the Department of Defense to study Post-Traumatic Epilepsy (PTE).

    This initial funding paves the way for future Congressionally Directed Medical Research Program Funds to be directed toward understanding PTE and its impact on veterans and civilians.

  • 2007

    Acquired epilepsy is linked to infections which cause central nervous system inflammation.

  • 2008

    CURE drives collaboration with NINDS to host the first scientific SUDEP conference.

  • 2009

    SUDEP registries are established in the US and Canada, thanks in part to funding by CURE.

    Since then, we have supported and advocated for other national registries for SUDEP.

  • 2010

    CURE partners with NINDS to develop the Centers Without Walls (CWOW) concept.

    These centers promote collaborative research and speed up the pace of epilepsy research.

  • 2010

    CURE is instrumental in creating Interagency Collaborative to Advance Research in Epilepsy (ICARE ). Led by NINDS, these annual meetings bring together government agencies, researchers, and patient advocates to discuss the state of epilepsy research, community needs, recent advances, and research goals.

  • 2011

    Zebrafish are established as a new animal model for testing the efficacy of medications to treat epilepsy. With CURE funding, Dr. Scott Baraban establishes this model and subsequently discovers two FDA-approved drugs that could potentially reduce seizures in children with Dravet syndrome.

  • 2012

    CURE plays a key role in publishing the first report on the prevalence of epilepsy, Epilepsy Across the Spectrum: Promoting Health and Understanding. Over 25 institutions came together to craft this now essential reading.

  • 2012

    The Partners Against Mortality in Epilepsy (PAME) meeting is established with help from CURE. PAME's goal is to create broader SUDEP awareness by bringing together doctors, researchers, families, and advocates.

  • 2014

    NINDS works with CURE to establish a SUDEP CWOW committing to fund $27.6 million in research over 5 years. This is the largest federal investment in SUDEP to date.

  • 2014

    The groundbreaking CURE Infantile Spasms Initiative begins, bringing an innovative team-science approach to epilepsy research.
    This multi-disciplinary approach to research was critical to securing funding from the Department of Defense in the following year.

  • 2015

    CURE is awarded a 5 year, $10 million grant by the Department of Defense to study PTE.

    Using a team-science approach, the team will develop new research models and biomarkers to understand risk factors for PTE.

  • 2015

    The HMGB1 protein is identified as a biomarker of epileptogenesis in acquired epilepsy and as a potential target for therapies to stop the associated seizures.

    This protein continues to be a key target in epilepsy research, with some current CURE grants exploring its role in the development and prevention of epilepsy.

  • 2015

    CURE launches the Epilepsy Genetics Initiative (EGI) to deepen our understanding of genetic causes of epilepsy by connecting patients, physicians, and researchers from around the world.

  • 2015

    Susan Axelrod and Illinois Senator Dick Durbin advocate to establish the Epilepsy Research Program at the Department of Defense. Congress directs $1.5 million toward studying the causes and prevention of PTE.

  • 2016

    CURE awards the first grant to study the interaction between sleep and epilepsy.

  • 2016

    EGI identifies a variant in the PPP3CA gene as a cause of epilepsy, giving physicians a new genetic cause to consider when diagnosing patients.

  • 2017

    A less invasive, more accurate method of recording electrical activity in deep layers of the brain is developed thanks to CURE funding.

  • 2018

    CURE funds the first four promising research projects as part of the PTE Initiative.

  • 2018

    CURE grantee Dr. Annapurna Poduri discovers a link between an epilepsy gene and sudden infant death syndrome (SIDS) making the case for researching epilepsy genes as a cause of sudden death even in the absence of an epilepsy diagnosis.

  • 2020

    CURE Epilepsy Catalyst, a new grant mechanism funding translational research, is introduced.

  • 2020

    Citizens United for Research in Epilepsy (CURE) rebrands to CURE Epilepsy, reinforcing our mission by further linking our brand to our ultimate goal.


Read these personal stories to see how research is helping to transform lives for those suffering from epilepsy.

Learn More About Our Work

About CURE Epilepsy

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CURE Epilepsy Report: Spring 2021