The mission of the SUDEP institute is to prevent early mortality in epilepsy; to promote research, education and awareness in sudden unexpected death in epilepsy (SUDEP) and early mortality; and to support families affected by mortality and epilepsy. An employee of the Epilepsy Foundation but with direct reporting to the SUDEP Institute Board Leadership, the Director of SUDEP Institute position will primarily be responsible for coordinating all program activities of the Foundation’s SUDEP Institute; collaborating with other organizations involved in SUDEP education, advocacy, research, information and referral; and working with the local network of foundations to ensure that program goals are met. This candidate must have experience with health education, mortality, and bereavement, and work well with diverse audiences.
Essential Duties and Responsibilities
Develop and implement, with the SUDEP Institute 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 Board, coordinating regular calls and updates.
Collaborate with other organizations concerned with SUDEP and mortality on the Foundation’s activities.
Develop and maintain current, accurate public information on SUDEP and mortality related issues for the Foundation, and ensure 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 website, social media, pamphlets, and on-line information.
Develop public awareness campaigns with the communications team related to SUDEP and prevention of 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 as needed the supports provided.
Support the bi-annual PAME conference coordination, development and implementation with outside collaborating organizations.
Oversee budgets, expense and staff supporting the SUDEP Institute and other projects as assigned.
Advanced degree in a health/medical, public health, social work/social services, or communications or equivalent area strongly preferred. Experience may be substituted for advanced degree.
At least five years of experience in project oversight, management and implementation, health education and promotion, writing and oral communication, and advocacy.
Program and project management experience a must
Work well with and can connect and coordinate 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 SUDEP, mortality, and bereavement a plus
Possess basic knowledge on legislative and regulatory principles for systems advocacy/change
Ability to use the internet and computer and database systems to research educational topics
The Epilepsy Foundation, a national non-profit with nearly 50 local organizations throughout the United States, has led the fight against seizures since 1968. The Foundation is an unwavering ally for individuals and families impacted by epilepsy and seizures. The Foundation works to prevent, control, and cure epilepsy through community services; public education; federal and local advocacy; and su...pporting research into new treatments and therapies. The Foundation works to ensure that people with seizures have the opportunity to live their lives to their fullest potential.