Phil Gattone
President and CEO, Epilepsy Foundation

Warren Lammert
Chair of the Board of Directors, Epilepsy Foundation

Epilepsy Matters! That important phrase and the new title for this editorial column, serves as a driving call to action and is the message we hear from individuals and families across the United States and around the world. Epilepsy matters at home, in school, at work and in the community. Epilepsy impacts the United States and global economies, costing billions of dollars in direct and indirect expense each year. Yet, despite the millions of people affected by epilepsy and its serious personal, economic and societal impact, it remains poorly understood, undertreated and underinvested. Sadly, a stigma still clings to epilepsy. The Epilepsy Foundation has taken a stand to increase awareness, improve both patient and professional education, improve treatments, and advocate to improve lives. We have taken seriously the 13 recommendations of the Institute of Medicine (IOM), and have incorporated them into our recently approved strategic plan.

In fact, the Epilepsy Foundation has already addressed many of the IOM recommendations. The IOM committee called on our community to more effectively coordinate services. The Epilepsy Therapy Project and the Epilepsy Foundation heeded that recommendation and merged in 2013 to leverage resources and coordinate efforts. The result has been greater coordination in epilepsy innovation and new therapy development for families facing epilepsy. The IOM committee asked the Epilepsy Foundation to lead the effort to improve community awareness and patient and family education. To address this directive, the newly merged Epilepsy Foundation invested significant resources to enhance epilepsy.com, the most visited educational and awareness epilepsy site in the world, reaching millions of people across the globe. The content on epilepsy.com is continuously updated by editors, Joe Sirven, MD and Epilepsy Educator Patty Shafer, RN, who are themselves advised by a range of other professionals on the Epilepsy Foundation Professional Advisory Board. The Epilepsy Foundation has created a nationwide public service announcement featuring TV’s Rick Harrison to raise epilepsy awareness. The Epilepsy Foundation established a seven-day 24 hour helpline, 1 (800) 332-1000 in both English and Spanish and added a grief counselor to assist those who have lost a loved one to SUDEP. This year, in collaboration with the Centers for Disease Control, the Epilepsy Foundation is piloting a sustainable self-management program with its affiliates. The project aims to bring personal care to people with epilepsy by teaching them more about managing their own conditions.

The Epilepsy Foundation has strengthened its partnerships. For example, our SUDEP Institute is a partnership between the Epilepsy Foundation, the American Epilepsy Society (AES) and several other professional and community organizations. The Rare Epilepsy Institute is a partnership between the Epilepsy Foundation, 10 rare epilepsy organizations, the Research Triangle Institute in Bethesda, Maryland, and Columbia University. The Epilepsy Foundation has joined the American Academy of Pediatrics to bring epilepsy information to children and families in underserved communities. The Epilepsy Foundation’s advocacy team continues to advance legal and legislative advocacy that incorporates both legal professionals and persons with epilepsy. The Epilepsy Foundation has a leadership presence in Washington, D.C. and works with state affiliates on state-government initiatives. The Epilepsy Foundation is privileged to train others in advocacy work and serve as the voice of people with epilepsy in our research initiative to bring a new sense of urgency for developing effective treatments.

Our mission is clear. The Epilepsy Foundation must continue to improve awareness, increase education, provide services, advocate for people with epilepsy, and accelerate innovation. Please join the fight. Help the Epilepsy Foundation spread the word about epilepsy, build partnerships, create stronger networks of advocates, to build helpful programs that are nationwide, and to hasten effective treatments and ultimately find a cure. The Epilepsy Foundation looks forward to working together with all our partners to achieve these important goals.

In Epilepsy & Behavior; December 2014; 41: 126.

Reprinted with permission from Epilepsy & Behavior, Elsevier for Editorials.