Epilepsy Foundation of America

(Remote or Washington D.C. metro area)

Title: Chief Executive Officer

View Position Brochure Here

THE ORGANIZATION:

Mission

To lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives.

Founded in 1968, the Epilepsy Foundation of America has a network of partners throughout the United States that work together to promote awareness, advocate for laws that matter to people with epilepsy, and advance the development of therapies and treatment for people with epilepsy. For more than five decades, the Epilepsy Foundation and its network of nearly 50 partners have helped to:

• Connect people affected by epilepsy to treatment, support and resources.
• Fund innovative research and the training of specialists.
• Educate the public about epilepsy and seizure first aid.

Programs also shine a light on epilepsy by promoting awareness and advocating for laws that matter to people with epilepsy. With more than 3.4 million people living with epilepsy nationwide, the Epilepsy Foundation is working to expand its impact with a vision to create a world without epilepsy.

One of the largest and longest-standing non-profit organizations dedicated to improving the lives of people living with epilepsy, the Foundation and its nationwide network has long held a leadership role in advocacy, education, direct services, and research. The Epilepsy Foundation is comprised of a national organization (EFA) which supports a network of local chapter offices and affiliated local 501c3 organizations. In collaboration with the Centers for Disease Control and Prevention, the Epilepsy Foundation has helped to improve access to care for people with epilepsy and trained people in seizure recognition and first aid.

Strategic Vision

The Foundation’s strategic vision for 2020-2025 has five pillars that are the bedrock of the organizational priorities:

Pillar 1 – Leading the Conversation:

Inform, inspire, and engage everyone to join the movement.

Pillar 2 – Shape the Future

Accelerate innovation and partnerships in healthcare and research and improve access and care for all people with the epilepsies.

Pillar 3 – Harness the Power

Improve the lives of people with the epilepsies by activating the field, volunteers and the broader community with the tools, programs and information they need.

Pillar 4 – Expand Revenue Resources

Enable more people affected by the epilepsies to engage with us and benefit from our mission by generating new resources, activating new technology and innovations.

Pillar 5 – Become a Best-in-Class Organization

Improve overall outcomes for people with the epilepsies by developing a data infrastructure and cutting-edge technology that utilizes the data for self-monitoring and management, advancing research, identifying patient cohorts for clinical trials.

To learn more about the Epilepsy Foundation, please visit https://www.epilepsy.com.

THE OPPORTUNITY:

Epilepsy Foundation seeks a visionary, forward-thinking leader with an entrepreneurial spirit for their next Chief Executive Officer (CEO).  The CEO will oversee a complex organization and provide vision, strategic direction, and leadership to expand the breadth of the organization to further support the nearly 3.4 million individuals nationwide with epilepsy, their caregivers, and healthcare providers.  Reporting to the Board of Directors, this individual will be responsible for overseeing a budget of $20 million, leading approximately 90 employees within the national organization and local chapters, and 900 volunteers within its network to ensure collaboration and growth towards the common goal to provide better therapies and management of epilepsy.  Direct reports include Chief Financial and Operating Officer, Chief Development Officer, Chief Mission Outcomes Officer, Chief Medical Officer (external consultant), Chief Health Informatics Officer (external consultant), and administrative staff. The CEO will partner with the Board to establish the Foundation’s next strategic vision and financial growth plan.

Responsibilities include but are not limited to:

Executive Leadership, Organizational and Financial Management

• Develop a national board-approved strategic plan, set clear objectives and goals for success, and execute the vision for the organization.
• Oversee the day-to-day operations of the organization and ensure its overall successful long-term operations.
• Ensure the organization’s financial stability and sustainability through aggressive fundraising, creating a culture of accountability, and by maintaining a healthy cash flow and adequate reserves.
• Act as primary liaison to the 23-member National Board of Directors.
• Monitor and coordinate activities to ensure that performance is consistent with the organization’s objectives.
• Collaborate and partner with chapters and affiliates nationwide to ensure execution of the Foundation vision.
• Recruit, retain, and mentor a high-performing, diverse team with a commitment to strong staff engagement, equity, and inclusion.
• Organize, motivate, and mentor internal team leaders to strategically grow the organization’s impact, programs, and fundraising in order to effectively fulfill its important mission.
• Apply innovative thinking and performance measurements to analyze and support strategic decision-making.
• Establish goals, objectives, operational plans, and a strategic plan with clearcut priorities in collaboration with the Board of Directors, staff, and other leaders.
• Maintain regular and ongoing communication to build strong relationships with internal and external stakeholders. 

Board Governance 

• Communicate effectively with the Board by providing members with all information necessary to continually function properly and make informed decisions in a timely and accurate manner.
• Gracefully collaborate with the Board to build consensus, remind of outstanding deliverables, and offer support.
• Effectively utilize and leverage Board expertise in executing the vision of the Foundation.
• Implement Board policies and procedures and build support for Board decisions amongst staff.
• Work closely and openly with the Board and its committees, ensuring ongoing communication of risks, issues, as well as successes. 

Chapter and Affiliate Collaboration, External Relations and Communications

• Serve as the external face of the organization, enhancing the Epilepsy Foundation’s visibility, brand recognition, and credibility.
• Proactively collaborate with the affiliates and chapters to establish a framework for coordination, communication and common goals to achieve growth and ultimately succeed in improving the lives of people touched by epilepsy.
• Present and promote the organization and its mission, programs, partners, and members.
• Ensure high visibility to donor prospects and the public and build interest in engaged philanthropy.
• Oversee all aspects of the organization’s marketing, and public and government relations. 

Development and Fundraising

• Drive development and fundraising in collaboration with the Chief Development Officer, leveraging the Board as needed.
• Establish and implement an aggressive metrics driven fundraising campaign to increase the number of donors to support growth in core, mission-critical activities.
• Expand outreach to supporters through multiple media and fundraising techniques.
• Working with the Chief Development Officer, initiate, cultivate, and extend relationships with the organization’s portfolio of individual, foundation, and corporate supporters.

DESIRED CHARACTERISTICS:

The ideal candidate is an empathetic and collaborative team builder and inspirational leader who operates from a strategic perspective, while also attending to all-important day-to-day activities. The CEO will be a forward-thinking leader with a pioneering spirit, who effectively utilizes data, strong business acumen and discipline to inform all decisions.

An inclusive leadership style that endorses collaboration, builds trust, and creates open, transparent communication among a highly diverse set of stakeholders will be an essential requirement for success. The CEO will accomplish goals through motivation, the delegation of authority, and the use of systems that are designed to create results and accountability.  The CEO must be diplomatic yet decisive and possess the ability to integrate, adapt, change and be able to influence other constituencies to work in collaboration toward common goals. 

Exceptional written and verbal communication skills are essential. In addition, the CEO will be an active listener, have strong interpersonal skills, and be a highly effective relationship builder. The capacity to engage and partner with internal and external stakeholders, including affiliates, chapters, various boards and the broader epilepsy community is essential. This individual will be a compelling ambassador for the Foundation’s mission and relate comfortably with a variety of donors and partners. The CEO must establish themselves as a thought leader among peers and other industry leaders in the epilepsy community.

Moreover, the successful candidate will possess keen critical thinking and problem-solving skills, and demonstrate sound judgment, technical expertise, financial acumen, strong organizational skills, and clear priority-setting skills. A curious and flexible thinker who seeks to learn new things, the CEO will be able to embrace and respond effectively to change both within and outside the organization. The CEO must also be a consensus-builder who can work on multiple levels with a wide variety of constituencies.  The successful candidate will value different voices and perspectives and possess a demonstrated commitment to the principles of diversity, equity and inclusion.

The CEO will always display integrity and an impeccable reputation for honesty and trustworthiness. Above all else, the successful candidate must be a champion for the individuals and families affected by epilepsy, deeply passionate about the Foundation’s mission and demonstrate an abiding commitment to achieve growth and ultimately success in improving the lives of people touched by epilepsy.  The next CEO will have the opportunity to expand the reach of the organization through aggressive growth and outreach strategies. Ultimately, the CEO will strengthen the fight to create a world without seizures. 

CAREER TRACK LEADING TO THIS POSITION:

The successful candidate will ideally bring some combination of the following:

• A track record of excellence in senior leadership positions, ideally from a complex, multi-site or a federated model nonprofit human service organization. Alternatively, transferable for-profit experience combined with a demonstrated passion for the Epilepsy Foundation’s mission. 
• A personal tie or affiliation to epilepsy or a significant network in the epilepsy community.
• Experience in public health, medical research or another disease related nonprofit.
• Success in motivating, recruiting, developing, retaining, and mentoring high performance, mission-driven, and results-oriented teams. 
• Exceptional financial, organizational, and administrative skills.
• The ability to inspire and influence others and to communicate a sense of mission and purpose.
• The ability to relate comfortably with a variety of donors and partners and, ideally, successful experience with individual, corporate, government and foundation fundraising.
• Experience working collaboratively with a Board of Directors in executing a vision and mission.

EDUCATION:

A bachelor's degree is required; an advanced degree is preferred.

COMPENSATION AND LOCATION:

The annual salary range for this position is $300,000 to $350,000 plus bonus based on performance. A comprehensive and competitive benefits package will be provided. The Foundation office headquarters was closed during the pandemic and the majority of the team now works remotely. There is a small office in Washington, D.C. where the CEO could work, or the CEO could work remotely and reside anywhere in the U.S. There is an expectation that the CEO will travel regularly. It is anticipated that in the first year, the CEO will travel approximately 50% of the time to visit national staff, affiliates, chapters, board members, and partner organizations throughout the country.