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.
One in 26 people will develop epilepsy in their lifetime. The impact of epilepsy varies broadly, imposing its greatest burden on children. While epilepsy affects more people than multiple sclerosis, cerebral palsy, muscular dystrophy, and Parkinson’s combined, it receives fewer federal dollars per patient than each of these.
Since its inception in 1998, CURE has been at the forefront of epilepsy research, having raised more than $43 million for research and other medical and scientific initiatives. Having awarded over 200 cutting-edge projects in 15 countries around the world and with more than 90% of CURE’s expenditures invested directly in the mission, CURE has invested in scientists and new areas of focus that have brought new attention and life to the field. Because of this, the epilepsy research community is strong, energized and poised to make true strides towards eliminating seizures and their consequences. This collective commitment, along with a significant increase in available funding, will help CURE to realize the true promise of research— to transform and save lives.
CURE Signature Programs
In 2015, CURE began a new research program dedicated to epilepsy research in veterans with traumatic brain injury with the help of a $10 million grant over five years from the Department of Defense, Psychological Health and Traumatic Brain Injury Research Program. The program will support a team approach to researching the prevention and treatment of Post-Traumatic Epilepsy.
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 help create a culture of personalized medicine for people with epilepsy.
The pioneer in Sudden Unexpected Death in Epilepsy research, CURE has awarded over 20 related grants since 2004, totaling more than $2 million. In 2012, CURE launched the Infantile Spasms (IS) Research Initiative, a team science approach to this rare but devastating epilepsy syndrome, which is designed to accelerate discovery and advance a new, innovative therapy into the clinic. An investment of $2 million in teams of investigators at multiple institutions around the country has encouraged collaboration and multi-disciplinary approaches to advancing this critically important science
CURE’s Scientific Team and Impact
CURE’s internal science team, under the leadership of Dr. Laura Lubbers, is committed to leading the organization’s efforts, identifying new opportunities and stewarding ongoing research investments. A Scientific Advisory Council comprised of five esteemed epilepsy specialists and more than 300 scientist volunteers, also lend their energy and expertise to CURE’s research program. A Lay Review Council made up of volunteers who have a special interest in understanding epilepsy research participates in CURE’s grant review process to ensure the stakeholder and patient point of view is always prioritized.
In 2000, CURE co-sponsored the National Institutes of Health Conference, Curing Epilepsy: Focus on the Future in March of 2000 —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, and also invests in the pipeline of future epilepsy researchers through various mechanisms that support young investigators
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 innovative scientific programs and initiatives.
Future Growth and Direction
The last few years have brought a number of promising trends. Collaboration has increased throughout the field and the community of epilepsy researchers is strong and growing. There have been meaningful strides in driving accountability and an increase in epilepsy-related research publications. And, most importantly, recent scientific advances have provided renewed hope that a disease modifying therapy or cure is within reach.
While the field faces challenges, primarily resources to support the exploding number of promising scientific opportunities currently in the field—a number of forces are aligned that will allow CURE to rapidly grow its influence and impact
CURE is well positioned to continue, at an accelerated pace, the core mission of finding a cure through increasing resources to invest in research and other initiatives; evaluating and expanding CURE’s Signature Programs; identifying and implementing new mission-related initiatives; and elevating CURE’s brand and public awareness of the mission to increase the community of supporters and strategic partnerships.
For more information about CURE, please visit cureepilepsy.org.
Poised to enter an exciting chapter of ambitious and transformative growth, CURE is seeking a Chief Executive Officer to provide strategic leadership and direction to fulfill the organization’s goal of making epilepsy research an international priority, and its mission to realize the true promise of research – to transform and save millions of lives.
This bold and results-oriented executive will focus on fundraising, operational efficiency and core mission delivery. Reporting to the Board of Directors and leading dedicated staff and volunteers, the CEO will work relentlessly and passionately to elevate the profile of CURE nationally and internationally. S/he will collaborate with the Chief Scientific Officer to fund and drive the scientific agenda and will oversee the Development, Marketing and Communications and the Science teams as well as contractor positions in Finance and Human Resources.
The executive will be the lead champion, ambassador and fundraiser for the organization, responsible for stewarding, cultivating and soliciting major gifts and broadening, diversifying and deepening the sources of support. S/he, in partnership with the Chief Scientific Officer, will leverage CURE’s leadership in innovative research and position to build strategic partnerships across a wide range of non-profit, governmental, advocacy and industry forums. Internally, s/he will have operational, financial and staff oversight, promoting a culture of collaboration and effectiveness and ensuring the team is continually moved by the work.
Key metrics for success for this CEO role include:
- Create a clear plan to elevate the CURE brand and raise awareness of epilepsy by driving the scientific agenda of the organization, which includes innovative research and developing key external strategic partnerships;
- Significantly increase and diversify funding sources by building and sustaining relationships with various constituents. Specifically, grow revenue from around $5.5MM in 2016 to a multiple of that in 5 years;
- Develop a strong relationship and partnership with the Founding Chair and leverage the engaged and motivated Board of Directors and various Committees to accelerate organizational impact. Work to maintain the unique collegial and purpose-driven organizational culture; and
- Lead an operationally efficient organization and instill a results-oriented, high-performing collaborative staff.
This position is based in Chicago, Illinois and will require travel.
The CEO will be passionate about championing and fulfilling CURE’s mission. S/he will have demonstrated results, focus and initiative to move ideas to reality and will have the character, confidence and personality to effectively partner with a broad range of constituents.
The ideal candidate will have the following professional and personal qualities and characteristics:
An Ambassador for CURE
The CEO will be a charismatic and high-energy leader and communicator who will serve as an ‘Ambassador’ for CURE. S/he will have an executive and mission-driven presence and will be able to eloquently promote and convey CURE’s mission and scientific agenda to a diverse range of constituents to generate support and inspire action. As the lead fundraiser, s/he will have a proven background in the field of development with a measurable track record of success. S/he will excel at working in partnership with the Board and senior management team to expand the organization’s development capacity, grow CURE’s donor base and brand equity and seek opportunities to build epilepsy awareness. A tactical leader, s/he will have a strong business orientation and an ability to use metrics to drive development decisions and achieve strategic objectives.
An Impact-Oriented Leader
The ideal candidate will have a strong track record of management experience and be skilled at building and professionalizing a sophisticated organization during a period of growth. S/he will excel in running an efficient organization and leading a team to execute on organizational goals and operationalize processes and systems. An inspiring and engaged leader, s/he will have experience in attracting, managing and retaining a high-performing staff with diverse set of skills and achieving organizational impact through leveraging individual strengths and cross-functional team work. This executive will be successful at setting clear priorities, delegating responsibilities and ensuring accountability and high standards for staff deliverables, while providing staff with a mission-driven work environment and professional growth opportunities.
Emotionally Astute Leadership
A natural relationship builder, the executive will exhibit a thoughtful approach to working with a range of constituents including the Board of Directors and Advisory Committees and to developing a strong connection and partnership with the Founding Chair. S/he will inspire trust and confidence building partnerships with diverse constituents and leading a team of staff and volunteers in furtherance of CURE’s mission. S/he will respectfully push the boundaries of CURE’s work and challenge the perspective of others to encourage mindful risk taking, innovation and proactivity in CURE’s platform. S/he will exhibit a high level of emotional intelligence and a mature personal style that embodies humility and sophistication.
Passion for the Mission
The CEO will have a passion for the mission of advancing research in epilepsy, and must be energized and dedicated to leading an organization well-positioned for explosive growth. S/he will be a bold and decisive leader who has unimpeachable professional and personal ethics and integrity, treating everyone with respect and dignity.
This executive can come from a variety of backgrounds including nonprofit, hospital and health systems, government and the private sector. Literacy in the field of a disease-research organization is highly desirable. The strongest candidates will bring fundraising and management expertise to this CEO role.
A Bachelor’s degree is required; an advanced degree in a related field is preferred.
Koya Leadership Partners, a national retained executive search firm that works with nonprofit clients, has been exclusively retained for this search. To express your interest in this role please submit your materials here or email Alison Ranney and Anny Chou directly at email@example.com. All inquiries and discussions will be considered strictly confidential.
About Koya Leadership Partners:
Koya Leadership Partners is a national retained executive search firm that works exclusively with nonprofits and social enterprises. We deliver measurable results, finding exceptionally talented people who truly fit the unique culture of our client organizations and ensuring that organizations have the resources and strategies to support them. For more information about Koya Leadership Partners, visit www.koyapartners.com.