Bruce Hermann, PhD
University of Wisconsin

Steven C. Schachter
Harvard University

Phillip Gattone
Epilepsy Foundation

Warren Lambert
Epilepsy Foundation

The View from Epilepsy & Behavior

In this issue of Epilepsy & Behavior we are pleased and honored to announce the initiation of an official partnership with the Epilepsy Foundation. We find this to be a time when we wonder what took so long to pursue an obvious course of action—a course with obvious mutual benefit to the parties involved and, most importantly, a course of action that can only have positive outcomes for people with epilepsy and the professionals who care for them.

This new relationship will have many layers. First, the EF will have dedicated editorial space in each issue of E&B to present and discuss topics and activities of interest to the larger epilepsy community. As the premier volunteer health organization for people with epilepsy, the EF has long been on the forefront of education, government affairs, advocacy, and research funding designed to advance knowledge and care for people with epilepsy and their family and friends. We hope this regular editorial space may even serve as a useful “bully pulpit” for the EF to provide the latest thinking and call for action by the readers of E&B. This new relationship will give the EF access to the wide and diverse readership of E&B and provide information and background to them which should be useful in advocacy, clinical care, and grant writing. The first EF editorial will deal with their novel “Pipeline Meeting”, the proceedings of which E&B will publish a few months later. Each month in E&B a different topic, activity, or theme willbe presented by the EF.

Second, E&B will publish the proceedings and outcomes of important EF consensus meetings,

Professional Advisory Board reports, “white papers”, and similar products from important EF activities. We think this information will be of interest and utility to the readership of E&B and we will give these materials the distribution needed to effect change.

Third, the EF and E&B will increase access to each other’s websites and electronic outlets. E&B will enjoy greater distribution to EF affiliate offices, their PABs and front-line affiliate staff. Our publisher, Elsevier, has agreed to provide the EF and its affiliate system access to E&B at discounted rates with free access to selected papers. Scientists who publish in E&B can be assured of an even greater distribution and readership for their work.

Relationships between scientific and voluntary health organizations have worked well for others. For instance, the partnership between the Alzheimer’s Association and the journal Alzheimer’s and Dementia has been especially effective. We at E&B will study associations of this sort closely and learn from them. Synergy should come naturally from this relationship—science should help advance advocacy and public policy, and public policy should help support and advance science.

The troubling time we find ourselves in, characterized by years of decreased funding for science and epilepsy research in particular, has served as a monument to lost opportunities at every level (basic science, clinical, translational), weakening the recruitment and retention of young scientists for epilepsy research, and decimating the labs of many established researchers. These and other troubling patterns must stop and we hope that this partnership is but one step in that direction.

The View from the Epilepsy Foundation

The Epilepsy Foundation is honored to be invited to partner with the highly esteemed journal Epilepsy & Behavior. The purpose and focus of Epilepsy & Behavior and the mission and vision of the Epilepsy Foundation, (stop seizures and SUDEP, find a cure and help people overcome the challenges of epilepsy) fit perfectly together. Epilepsy & Behavior represents the most pertinent and current information related to psychological, behavioral and social aspects of care for people with epilepsy. The collaboration of journal and foundation will enhance communication and understanding between health-care professionals—physicians, researchers, nurses, social workers, advocates-- and people with epilepsy and their families—a unique opportunity indeed. We at the Epilepsy Foundation are excited to begin.

The Foundation has always had a strong relationship with our professional colleagues. Partnership between the EF and E&B will further bring together the community of professionals caring for people with epilepsy with advocates, innovators and service professionals across the nation. It will provide the Foundation with unique opportunities to showcase the work that it does to improve the lives of people with epilepsy. We will be able to highlight our broad reach and partnerships through our digital platform (www.epilepsy.com) and social media; our research and new therapy initiatives designed to develop innovative new treatments in a timely manner; our individual and legislative advocacy initiatives for individuals with epilepsy and their families at the local, state and national levels; the guidance we provide in matters that affect our constituents’ lives; our important and nationwide partnership with the Centers for Disease Control (CDC); and our public awareness campaigns. It will be important that epilepsy professionals learn to know the breadth and depth of the EF’s work.

In understanding epilepsy and its ramifications, the Epilepsy Foundation believes that research has enhanced meaning when patients themselves are significantly involved. A recent award from the Patient-Centered Outcomes Research Institute (PCORI) is an example of patient-driven research in which the EF is the lead and partners with several patient advocacy organizations. It supports the importance of patient voices in research activities. The partnership between Epilepsy & Behavior and the EF can be an avenue for patient voices to reach the professional world: It may allow promotion of issues important to persons with epilepsy that the professional has not considered. However, this aspect of the partnership can work two ways. While researchers and clinicians need to hear patient voices so also do patients need to know about the work that researchers and clinicians are doing. Through our joint websites and other electronic outlets and the generosity of Elsevier, we will be able to provide précis of many of the findings published in E&B in a format that is meaningful to our constituents and their families.

It is a new day at the Epilepsy Foundation. Our recent merger with the Epilepsy Therapy Project allowed us to leverage the two most visited epilepsy websites in the world and more broadly join together two important missions. Our new web site and social media platforms and our on-going local and national programs have made the EF a premier resource for epilepsy for the lay public and for professionals. Our partnership with Epilepsy & Behavior is an opportunity to build new collaborations, share information, and enlarge the community of those people dedicated to the care of people with epilepsy. We agree with Epilepsy & Behavior’s editorial team that this partnership will allow us to promote and support research by increasing public awareness. Patient voices can be strong in building campaigns to support research and programs, but joint voices of professionals and patients can be even stronger. The EF is grateful to Epilepsy & Behavior for this opportunity, and we look to a very productive future together.

Note: The authors have no disclosures to report.

In Epilepsy & Behavior; July 2014; 36: 180-181.

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