INNOVATOR SPOTLIGHT
Q&A with Susan Axelrod, chair and founding member of Citizens United for Research in Epilepsy (CURE)
June 2011
Q: What prompted you to start your own foundation?
CURE was founded around a kitchen table - literally - by parents of children with epilepsy, including myself, who were frustrated with our inability to protect our children from the devastation of unrelenting seizures and the side effects of medications. We felt that their needs and the medical needs of their children weren't being met by the community and were unwilling to sit back and accept the debilitating effects of epilepsy. To that end we joined forces to spearhead the search for a cure.
Q: What do you think has been your biggest achievement?
CURE's greatest accomplishment has undoubtedly been to change the dialogue within the epilepsy community and beyond. In 1998, the dominant conversation within the community was how epilepsy patients could "live well" with their diagnosis, and the primary focus of research was on simply stopping seizures without a focus on cause, prevention, or cures. CURE's unrelenting focus on the message of finding a cure and putting an eventual end to the suffering of over 50 million individuals worldwide has had a tremendous impact on how the entire community thinks about its work and the value of that achievement is truly immeasurable.
This redirection of goals has been accomplished through aggressive public awareness efforts, which have both helped to increase the number of private dollars dedicated to epilepsy research, and influenced the epilepsy research agenda at the NIH.
Q: What are your goals for 2011, and what will it take to get you to realize these goals?
CURE's goal for the next year is to dramatically increase the amount of innovative and breakthrough research funded — topping $2 million in annual awards for the first time—with an increasing focus on research that truly begins to translate the basic scientific understanding of epilepsy to the treatment, prevention, and eventual cure of all forms of epilepsy. This field needs to identify biomarkers, validate targets, and develop animal models that truly mimic the human condition. To this end, of course, fundraising and public awareness efforts must be continued and accelerated.
CURE is also in the process of hiring a research director who will spearhead a new "interventionist" approach to CURE's research program—setting targeted milestones collaboratively alongside researchers, with active monitoring done in-house, and hosting semiannual meetings to provide a forum to share progress to date, positive and negative results, and implications for future directions.
Q: Is there anyone you haven't been able to collaborate with yet that you'd like to?
Most recently, CURE has been working closely with many other organizations within the epilepsy community on the Institute of Medicine's report on the "Public Health Dimensions of the Epilepsies," to be released in 2012.
The greatest opportunity area for advancing research, though, lies in collaboration with organizations and experts focused on other disciplines and disease states—especially those within other neurological areas. CURE has taken steps to promote collaborative research by establishing a multidisciplinary research award. This program awards a joint seed grant in support of collaborative, multidisciplinary research undertaken by at least two investigators—one of whom must be outside of the epilepsy field.
CURE also continues to seek opportunities for partnership with organizations related to the co-morbidities associated with epilepsy. An example of this is the most recent co-sponsorship of a scientific conference with Autism Speaks. Recent studies have shown that up to 40 percent of children with autism also suffer from seizures—the belief is that breakthroughs will be accelerated by the coming together of different disciplines.
Q: What are among your most significant research achievements?
Since its inception in 1998, with a tiny staff and an army of dedicated volunteers, CURE has raised over $18 million to fund epilepsy research and other initiatives that will lead the way to a cure. CURE has awarded 116 cutting-edge projects, through various grant mechanisms designed to attract new people and new ideas to solving the many unanswered questions about epilepsy.
For scientists, particularly in academia, success and progress is most often measured by numbers of grants and publications. Many CURE researchers have secured additional grants and successfully published their findings in esteemed scientific journals—over 106 publications to date—and the CURE young investigator and multi-disciplinary award mechanisms have spawned new interest in epilepsy.
However, although CURE deeply values the careers and continued successes of the people upon whom we are dependent for breakthroughs, CURE's end goals are very different. CURE has maintained its singular focus on research that will ultimately improve and save lives. This redirection and continued focus on the patient, prevention, and cures is CURE's most significant achievement and contribution to the field.
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