Janice Buelow, R.N., Ph.D., F.A.A.N.
Vice President, Research and Programs

Philip Gattone
President and CEO, Epilepsy Foundation

In this issue, Dr. Roch Doliveux provides a rich history of his professional and personal journey in drug development for epilepsy (1). Some time ago, Roch lost a loved one to SUDEP. As is often the case, a tragedy led to re-doubled effort to help those with epilepsy. We are grateful for his positive attitude in working with the Epilepsy Foundation to stop seizures and SUDEP, and to help persons with epilepsy live better lives. We are fortunate to have people like Roch who are dedicating their careers to improve outcomes for people with epilepsy.

Dr. Doliveux highlighted important issues in his editorial, among which is the discouraging idea that outcomes in treating seizures are not better now than they were 30 years ago despite the use of new drugs. The Foundation is concerned about this lack of progress toward finding effective treatments. The father of a child with Dravet Syndrome, EF Board Chair Warren Lammert has worked to identify and support potential new therapies. His key phrase, “Find effective treatments in a time frame that matters for people with epilepsy,” is now a marching order for us at the Foundation. Board member Jim Jacoby has supported research initiatives in precision medicine that may prove effective in those with the hardest to treat epilepsies.

The heartache and distress occasioned by losing a loved one to SUDEP is shared by more than one board member. Roch recently lost his godson to SUDEP. Because of this loss, he was very interested in the collaborative effort of the SUDEP Institute that is led by the Epilepsy Foundation. Board member Steve Wulchin also lost his son to SUDEP and because of that loss wanted to help others. It was Steve who initiated the SUDEP Institute and he continues to support it. His work has helped thousands of people with epilepsy and their family members learn about SUDEP and understand the steps they can take to reduce their risk. Together, Roch and Steve are supporting a contest designed to understand the mechanisms associated with SUDEP and increase public awareness about SUDEP. This important work, through the Epilepsy Foundation, has the chance to bring about change for people with epilepsy.

In his writing, Dr. Doliveux mentioned the stigma that continues to cling to epilepsy in public perception. The Epilepsy Foundation is dedicated to addressing this significant social and psychological issue for people with epilepsy. Awareness has been shown to be an important step in reducing stigma. Board member Rick Harrison, star of the “Pawn Stars” series on the History Channel, is not afraid to talk about epilepsy. After having epilepsy as a child, he is now trying to help others. His public service announcements, viewed world-wide, are instrumental in this effort.

The Epilepsy Foundation would not be where we are today without the leadership of our board of directors. In this editorial we have highlighted just a few who have made differences for people with epilepsy but every member of the board brings support to our cause because they understand our mission. We applaud these great leaders and thank them for their guidance while we build research and programs that are designed to help people with epilepsy.

This editorial received no funding and we have no conflicts to report.

References

  1. Doliveux, R & Schachter, SC. Lining up against epilepsy: we're all in this fight together.

In Epilepsy & Behavior; September 2015; 50: 90.

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