National Institute Director (Remote Work Opportunity) – Epilepsy Foundation
Every year, 1 out of 1,000 adults and 1 out of 4,500 children with epilepsy die from Sudden Unexpected Death in Epilepsy (SUDEP). Neurologists know that sudden unexpected death in epilepsy is second to stroke as a cause of years of life lost because of a neurological disorder, but somehow it remains a little-known and seldom-mentioned phenomenon. Many neurologists didn’t learn about SUDEP in medical school and some intentionally don’t inform patients — deciding it wouldn’t help them to know.
As the Director of SUDEP Institute within the Epilepsy Foundation, you will create partnerships that promote research, education, and awareness so that patients have the full picture, and loved ones don’t learn about SUDEP when it is too late. In this role, and in coordination with the SUDEP Institute Advisory board, you will establish meaningful and measurable goals, all driving towards greater SUDEP public awareness, and ultimately the elimination of SUDEP. To do this, you will coordinate and manage program activities, collaborate with other organizations involved in SUDEP education, advocacy, and research, as well as work with our local network of 50 foundations. We will rely on you to take projects from start to finish, facilitate partnerships, have your pulse on the issues, build strong and informative communications, listen for and learn about opportunities for funding, and set overall priorities. We are in the early stages of building our momentum; the Epilepsy Foundation and SUDEP Advisory Board has set a goal for the SUDEP Institute to become self-sufficient within three years (raising $500,000+ from donors and partners).
In this role, you will be an employee of the Epilepsy Foundation and report to the SUDEP Institute board leadership. You will have wide-ranging stakeholders that you work with and support in this role — those with epilepsy and their families, bereaved families, the medical community, medical examiners, the research community, donors, and the Epilepsy Foundation. While you will have sole responsibility for managing all SUDEP Institute operations, you will have the full support of the Epilepsy Foundation, including access to all of our resources. Your success in this role will be measured by your ability to move the mission forward – ending early mortality and supporting families affected by this and epilepsy.
Responsibilities of the National Institute Director
- Develop and implement, with the SUDEP Institute Advisory Board’s leadership, the goals of the SUDEP Institute and all mortality-related activities of the Foundation.
- Serve as key staff liaison to the SUDEP Institute Advisory Board, coordinating regular calls and updates.
- Collaborate with other health and professional organizations concerned with SUDEP and mortality.
- Develop and maintain current, accurate public information on SUDEP and mortality-related issues for the Foundation, ensuring the content is available in health-literate formats for families, individuals, and affiliates. This includes all media platforms of the Foundation, including articles for newsletters, materials and resources for our website, social media, pamphlets, and online
- Develop public awareness campaigns with the communications team related to SUDEP and the prevention of early mortality.
- Support and promote healthcare professional education on SUDEP and mortality in coordination with the Foundation’s professional education activities both in the home office and in the local network.
- Coordinate support for those bereaved through the Foundation’s information and referral staff and bereavement counselors. Evaluate and modify the supports provided as needed.
- Support partner organizations with coordination, development, and implementation of the bi-annual Partners against Mortality in Epilepsy conference.
- Oversee budgets, expense, and staff supporting the SUDEP Institute and other projects as assigned.
Qualifications of the National Institute Director
- At least seven years of experience in project oversight, management, and implementation; public awareness and outreach; written and oral communication; and advocacy.
- A Bachelor’s degree is required. An advanced degree is a plus.
- Ability to connect, coordinate, and work well with diverse audiences, including physicians, medical examiners and pathologists, SUDEP and other epilepsy-related partners, and those who have experienced personal loss due to epilepsy.
- Experience with health education and communications for serious diseases, illnesses, and disorders. Complementary experience with bereavement is preferred.
- Basic knowledge of legislative and regulatory principles for systems advocacy/change.
- Ability to work beyond normally scheduled hours, and travel, on occasion.
Attributes of the National Institute Director
- Strong business acumen. You set priorities wisely and know how to make tough resource allocation decisions, always finding a way to forward strategic initiatives while enriching relationships. You also know how to translate strategy into action.
- Mission-driven. You understand the big picture and easily translate our objectives that impact public policy. You get what matters and what serves the mission.
- Results-driven. You see the big picture and the details, monitor your key performance metrics, and take the action necessary to produce results.
- Project manager. You thrive on checklists, advance planning, and follow-through, skillfully managing numerous daily commitments and competing priorities.
- Rapport-builder. You have a natural ability to bring people together and to develop strong, collaborative relationships both within and outside the organization.
- Great communicator. You are articulate, persuasive, and willing to listen to and respect the views of others. You confidently engage with stakeholders at all levels to define needs and expectations. You collaborate on projects and communicate results.
- Flexible. You are comfortable working in a fluid environment and are capable of making adjustments in both day-to-day and larger-scale activities based on new information and situations.
What’s Attractive to the Right National Institute Director Candidate?
- The success of the Institute will have significant life-saving impact on potentially millions of individuals living with epilepsy and their families.
- This program is board driven and is yours to own and build. You will have the opportunity to blaze the path forward and significantly build this enterprise all while being supported by Foundation resources.
- This is a high visibility role where you will build relationships across organizations and in many different industries. You will become the go-to person and a trusted resource for SUDEP.
- We offer a comprehensive benefits package including the ability to work in our local office or 100% remote, vacation and sick leave, holidays, medical, dental and vision insurance, long and short-term disability, 401k with match, and more.
To Apply for the National Institute Director with the Epilepsy Foundation:
Internally this position title is Director of SUDEP Institute.
Use the "Apply" button on this page or email your resume to Aileen Hedden at email@example.com with “Epilepsy Foundation – SUDEP Director / 2017-2264 SA” as the subject of the email.
Alternative Titles: Project Director, National Director, Deputy Director, Institute Director, Foundation Director
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