Citizens United for Research in Epilepsy (CURE), is the leading nongovernmental agency fully committed to funding research in epilepsy. The organization was founded by Susan Axelrod and a small group of parents of children with epilepsy who were frustrated with their inability to protect their children from seizures and the side effects of medications. Unwilling to sit back, they joined forces to spearhead the search for a cure.
Since its inception in 1998, CURE has been at the forefront of epilepsy research, raising more than $28 million to fund research and other initiatives that will lead the way to a cure for epilepsy. CURE funds grants for young and established investigators and has awarded more than 160 cutting-edge projects in 13 countries around the world to date.
In May 2014, CURE launched a new signature program, the Epilepsy Genetics Initiative (EGI). With an initial $1 million in funding, EGI will create a comprehensive, interactive database where patients can have their genetic data repeatedly analyzed in an effort to identify the cause of their epilepsy. These data will also be made available to epilepsy researchers in an effort to find new causes of epilepsy and use these findings to guide treatment. EGI brings patients, medical professionals, and researchers together in a mutually beneficial way to advance the genetics of epilepsy and to help create a culture of personalized medicine for people with epilepsy.
The leader in Sudden Unexpected Death in Epilepsy (SUDEP) research, CURE has awarded 21 SUDEP-related grants, totaling more than $2 million, since 2004. In 2012, the organization pioneered the first-ever Partners Against Mortality in Epilepsy (PAME) meeting and launched the Infantile Spasms (IS) Research Initiative to accelerate the understanding of IS and advance a new, innovative therapy into the clinic. With $2.1 million in grant funding to date, eight teams of investigators are focusing on cutting-edge research for IS, a rare childhood epilepsy syndrome. The project involves investigators at multiple institutions around the country and uniquely promotes a multidisciplinary, team science approach that encourages collaboration between researchers.
CURE boasts an internal scientific team made up of three accomplished epilepsy researchers, committed to helping find a cure. There is a Scientific Advisory Council comprised of five esteemed epilepsy specialists and more than 300 scientist volunteers who lend their expertise in the field to review grant applications. CURE has a Lay Review Council (LRC) made up of volunteers who have a special interest in understanding epilepsy research. Members of the LRC participate in CURE’s grant review process and read research proposals to ensure the stakeholder point of view is critically represented at all stages.
In 2000, CURE co-sponsored the National Institutes of Health Conference—the first of its kind to focus on a cure for epilepsy. In addition, CURE was one of the key sponsors involved in shaping the direction and outcome of a newly commissioned report released in March 2012, The Public Health Dimensions of the Epilepsies. The organization was instrumental in the creation of the NIH Epilepsy Research Benchmarks, which were created to help guide the community toward a cure.
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. CURE's research program is cutting-edge, dynamic and responsive to new scientific opportunities and directions through both investigator-initiated grants and unprecedented scientific programs and initiatives.
Tireless in its efforts and determination, CURE won’t stop
until a CURE is found for epilepsy.