POSITION AND CANDIDATE SPECIFICATION
Chief Scientific Officer
CURE, Chief Scientific Officer
January 2016
Page 1
POSITION SPECIFICATION
Client Organization
Citizens United for Research in Epilepsy (CURE) is a nonprofit organization whose
mission is to cure epilepsy, transforming and saving millions of lives, by identifying and
funding cutting-edge research, and challenging scientists worldwide to collaborate and
innovate in pursuit of this goal. CURE was the first organization to push the concept of
finding a cure for epilepsy. CURE is the largest nongovernmental funder of epilepsy
research and has awarded over $25 million in research grants worldwide.
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 $32 million to fund research and other initiatives that will lead the way to a cure
for epilepsy. CURE has funded nearly 200 research projects in 15 countries to date,
created new programs, provided support for young investigators to build the pipeline that
will fuel future discoveries and sponsored scientific meetings and conferences. The
organization has done all this by challenging the epilepsy research community to
collaborate and innovate in pursuit of its mission.
Innovation at CURE
CURE Impacts the National Research Agenda 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,
unprecedented scientific programs and initiatives and scientific conferences and
seminars. Since inception CURE has pushed the envelope, assessing milestone driven
outcomes and trying new things. CURE is not afraid to fail. As the organization’s budget
has grown, CURE has established a strong in-house scientific capability with its research
team, while at the same time valuing the patient voices.
In April 2015, 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. This 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
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January 2016
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mutually beneficial way to advance the genetics of epilepsy and to help create a culture of
personalized medicine for people with epilepsy.
As the leader in Sudden Unexpected Death in Epilepsy (SUDEP) research, CURE has
awarded 27 SUDEP-related grants, totaling more than $3.1 million, since 2004. In 2012,
the organization partnered with other key organizations to create, plan and launch the
first-ever Partners Against Mortality in Epilepsy (PAME) meeting and launched
the Infantile Spasms (IS) Research Initiative to accelerate the understanding and advance
a new, innovative therapy for this rare childhood epilepsy syndrome. With $3.5 million in
grant funding to date, six teams of investigators focus on cutting-edge research for IS.
The project involves investigators at multiple institutions around the country and uniquely
promotes a multidisciplinary, team science approach that encourages collaboration
between researchers.
Citizens United for Research in Epilepsy announced in November 2015 that it will create a
new research program and focus with a grant of approximately 10 million dollars over five
years to go toward epilepsy research in veterans with traumatic brain injury. The grant
was awarded by the Department of Defense and will support a team approach to
researching the prevention and treatment of Post-Traumatic Epilepsy (PTE). The
program includes convening a meeting of key opinion leaders in epilepsy, traumatic brain
injury and veterans’ health to determine opportunities of biggest impact over the next five
years. The outcomes of the meeting will serve as the basis for the development of a
targeted team science research program.
CURE boasts an internal scientific team made up of two accomplished epilepsy research
program officers, an external consultant and two administrators, committed to helping find
a cure. There is a Scientific Advisory Council comprised of six 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
critical stakeholder point of view is represented at all stages.
In 2000, CURE initiated and drove 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. CURE was instrumental in
the creation of the NIH Epilepsy Research Benchmarks, which were created to help guide
the community toward a cure. As a result of CURE’s leadership role in SUDEP, in 2014
the NIH launched the first ever SUDEP Center without Walls awarding $5.9 million in
fiscal year 2014, with plans for five years of funding for this virtual research center.
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January 2016
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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 has 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.
The field also continues to face major challenges. Per patient funding of epilepsy research
continues to be inadequate to create long-overdue breakthroughs and while basic and
clinical epilepsy research has expanded from primarily focused on seizure control to
include prevention and halting progression of the disease there is still a ways to go to
reach full potential in the funding and shaping of epilepsy research. And, finally, for
scientific discoveries to translate into cures, the community needs to come together to
develop and implement the infrastructures needed to support novel clinical trials.
CURE’s goal is to continue to be a vocal advocate for making epilepsy research a national
priority. The 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 funding, will help CURE to realize the true promise of research—
transforming and saving lives.
For more information, visit their website at www.cureepilepsy.com
Position Summary
The Chief Scientific Officer (CSO) is responsible for driving the scientific agenda of the
organization, both internally and externally, in ways that measurably accelerate progress
towards curing epilepsy. The CSO recruits and develops scientific talent to serve the
organization in employed, partnership and volunteer capacities. The CSO builds
relationships across a wide range of non-profit, governmental and industry forums to
advance the mission of the organization. The CSO will also play a significant role in
stewarding, cultivating and soliciting major donors. The CSO will be in a position, in
collaboration with the CEO and staff and volunteer leadership teams, to enhance research
streams, expand the CURE portfolio and drive forth the growth of the organization
centered around the vision to make an enormous and transformative impact on epilepsy
prevention and care.
The CSO works with the Chief Executive Officer and volunteer leadership to develop
innovative research strategies supported by corresponding funding proposals and
development strategies necessary for success. This position reports to the Chief
Executive Officer and has direct management responsibility for a team of research
scientists and research administrators. Additionally, the CSO will work in partnership with
the Board of Directors and build relationships with funded investigators (past, present and
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January 2016
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potential). This position is based in CURE’s Chicago headquarters. Limited travel is
required.
Key Relationships
Reports to:
Chief Executive Officer
Direct reports:
Director Research Administration (1)
Associate Director for Research (2)
Other key relationships:
Board of Directors
Volunteer Chair Research Committee
Patients, Families and Advocacy Organizations
Global Group of Epilepsy Researchers
CURE Supporters and Donors
Scientific Advisory Committee
Major Responsibilities
Research Programs:
•
Develops and directs the organization's global research strategy including:
o Priority Areas of Research
o Funding Mechanisms
o Collaboration and Accountability Forums
o Non-Profit Government and Industry Partnerships
o Patient Engagement
•
Champions innovative avenues for investigation based on scientific advances,
industry trends, patient priorities and knowledge of the epilepsy community and
beyond.
•
Stewards award funding by aligning selection criteria with the research strategy and
mission, and recommending awards for approval based on the over-arching research
goals and objectives.
•
Leads and cultivates CURE’s Scientific Advisory Council and Research Committee,
and leverages their talents to drive the research strategy.
•
Effectively and regularly communicates CURE’s research strategy, progress and
future opportunities to internal and external stakeholders, including donors and
prospects.
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January 2016
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•
Plays a significant role in stewarding, cultivating and soliciting major donors. Works
directly with donors to make sure they understand the research portfolio, the ways
their gifts were allocated, research outcomes/findings, and new opportunities for
restricted and general giving.
Leadership and Management:
•
Builds a high performing team of world-class scientific talent across CURE’s staff and
voluntary roles.
•
Serves as a member of CURE’s executive leadership team; builds a culture of
interdisciplinary partnership with Development and Communications teams.
•
Leads with a collaborative, flexible and inclusive management style.
•
Develops and manages the financial dimensions of the research business.
•
Represents CURE to external audiences; builds and maintains strong relationships
with and amongst key stakeholders.
•
Proactively engages donors and prospects in the research mission.
•
Act as a public face and ambassador for CURE, engaging policy makers and funders,
to include members of Congress, the NIH, and high-net-worth contributors, to advance
CURE’s strategic and scientific priorities.
•
Provide expertise for CURE’s internal and external policy statements and serve as a
spokesperson to the media when appropriate.
•
The preceding description is not designed to be a comprehensive listing of all duties
and responsibilities required of the Chief Scientific Officer.
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January 2016
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CANDIDATE SPECIFICATION: KEY SELECTION CRITERIA
Ideal Experience
•
An M.D., Ph.D., or M.D./Ph.D. in neuroscience or related field required.
•
Proven experience managing a diverse team of professionals.
•
Demonstrated ability to influence results through a deep network of professional
relationships and collaborative partnerships.
•
Experience with translating basic science discoveries to practical applications that
positively impact patients.
•
Track record developing, leading and/or working within pre competitive researchoriented consortia or collaborations.
•
Proven ability to work beyond the science: Understands the full value chain of how
science is turned into applications (e.g. medicines, diagnostic tech, assistive tech
etc.).
•
Demonstrated familiarity with the regulatory context (FDA/EMA) for how science is
developed, venture philanthropy (supporting entrepreneurships/ teaching investors/
educating payers), and the many initiatives shaping science from technology, law and
policy.
•
A strong track record of success with increasing responsibilities in managing and
leading scientific/clinical programs is required. This experience could have been
gained in academic medical centers, major research centers or enterprises,
government agencies and/or biopharmaceutical companies.
Professional Attributes
•
Strong communicator; experience and comfort level working with media and familiarity
with digital communication channels such as Twitter, LinkedIn, etc.
•
Ability to synthesize information across a broad range of scientific and technological
advances and identify and communicate differentiated opportunities for CURE to
make an impact.
•
Demonstrated results, focus and initiative.
•
Adaptable to a dynamic and fast paced environment.
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January 2016
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•
Ability to adjust to budget fluctuations.
•
Committed to the development of self and others.
Critical Competencies for Success
Strategic Orientation
The successful candidate will possess the ability to articulate the scientific, clinical,
organizational, regulatory and financing context within which the organization must
operate, and will be able to use such understanding to effectively evaluate both short- and
long-term priorities and opportunities. The outstanding candidate will have a track record
of translating this organizational strategy into an effective, long-term action plan.
Management Skills
The ideal candidate will demonstrate the ability to manage both the prioritization and
allocation of resources across multiple projects, and to manage ongoing budgets once
they are in place. In addition, the ideal candidate will demonstrate the ability to manage a
team that includes both scientific and lay staff, understanding the nuances and differences
in terms of motivating people and managing their performance.
Communication and Influencing Skills
The successful candidate will be able to build strong working relationships with all key
stakeholders and gain their confidence and support in an organization that is embarking
on substantial new initiatives. He/she will couple this with logical, fact-based arguments
and prepared responses to anticipated objections to help guide towards the right
decisions for the organization. The ideal candidate will use diplomacy and both direct and
indirect authority to gain alignment among multiple internal and external constituencies.
The ability to successfully communicate to an eclectic group of stakeholders is paramount.
Other Personal Characteristics
• Unimpeachable professional and personal ethics and integrity.
• A passion for the support of patient services and advocacy.
• A dynamic visionary whose commitment to the mission and vision of CURE is palpable
to all.
CURE, Chief Scientific Officer
January 2016
Page CONTACT INFORMATION
Spencer Stuart has been retained to assist CURE with this important recruitment. Spencer Stuart and
the Search Committee respect the importance of maintaining confidentiality. Letters of application,
with curriculum vitae and letters of nominations should be submitted by email to:
dwestmore@spencerstuart.com
Or by mail to:
Spencer Stuart
c/o Diane Westmore
3560 Lenox Road
Suite 2700
Atlanta, GA 30326
Phone: 404.504.4412