The 4th Judith Hoyer Lecture in Epilepsy was a highlight of the opening day of the 1st North American Regional Epilepsy Congress. This annual lecture commemorates the work of the late Mrs. Judith Hoyer, an active member of the Board of Directors of the Epilepsy Foundation and wife of Rep. Steny Hoyer (D-MD), soon to be the House Majority Leader. Mrs. Hoyer worked tirelessly to help families cope with epilepsy, to improve quality of life for patients and their families, and to promote research for a cure.

Daniel Lowenstein, MD, past president of the American Epilepsy Society, was the invited lecturer for this keynote presentation.  Dr. Lowenstein is Professor and Vice Chairman, Department of Neurology and Director of the Epilepsy Center at the University of California at San Francisco (UCSF) School of Medicine. He is also the Director of Physician-Scientist and Education Training Programs for the UCSF School of Medicine. Dr. Lowenstein is a clinician-scientist who studies both basic science and clinical aspects of epilepsy. His laboratory studies have addressed the fundamental mechanisms of neuronal network remodeling that occur during epileptogenesis

Progress and Prospects for Those with Epilepsy

The title of Dr. Lowenstein’s lecture was “Pathways to Discovery in Epilepsy Research: Rethinking the Quest for Cures”.  He is one of a group of researchers who have been working to understand the biological basis of epilepsy and translate this understanding into effective therapies. Major challenges to making further headway include the complexity of the underlying pathophysiology, the variability of the condition among the patients, and the difficulty in performing multidisciplinary research. Dr. Lowenstein was invited to discuss recent progress and the increasing prospects for success that will have a major impact on patients living with epilepsy. He was introduced by Story C. Landis, PhD, Director of the National Institute of Neurological Disorders and Stroke. 

Dr. Lowenstein divided his talk into three parts. He began by discussing the impact of epilepsy on patients, their loved ones, and others devoted to improving their lives. After sharing patients’ experiences in their own words, he noted that in the physician’s office each patient’s story is “unique and distinctive, but the fundamental questions are virtually always the same: ‘Why did this happen to me?’ ‘What is the best treatment for my epilepsy?’ ‘Why isn’t therapy working?’ ‘When will the seizures go away?’” Dr. Lowenstein shared his frustration in not yet being able to offer definitive answers to these questions. 

Progress Over the Past 100 Years

He then briefly reviewed the remarkable progress that has been made over the past 100 years in understanding the fundamental nature of epilepsy and advancing treatment. He highlighted the historic White House sponsored Epilepsy Cure Conference held in March of 2000, hosted by NINDS and cosponsored by the Epilepsy Foundation, the American Epilepsy Society, Citizens United for Research in Epilepsy, and the National Association of Epilepsy Research Centers.  At that conference, benchmarks were developed to help set research priorities and to measure progress over subsequent years.  Dr. Lowenstein recently attended a meeting of Benchmark Stewards, who have been keeping track of activity in each area and have been assisting NINDS in their attempt to increase the funding that can be targeted toward epilepsy research.

A Promising, Bright Future

Dr. Lowenstein next shared his thoughts about the future, which he characterized as “incredibly promising and bright.”  He believes that the future lies with “the formation of larger and more complex research networks that will link together many individuals, all relying heavily on machines and technology, working toward common goals.”  The work of innovative and imaginative individual scientists and small groups will continue to be important, even in this collaborative context. He encouraged the continued funding of promising research by these individuals that explores the unknown.  But he concluded by stating that what he finds remarkable “… is the rate at which the scope of pooled creativity is increasing.” 

Dr. Lowenstein offered several outstanding examples for the audience to consider, including the Epilepsy Phenome/Genome Project, a large-scale study aimed at understanding the genetic factors underlying a specific set of human epilepsies, as well as the genetic factors influencing pharmacoresponsivness that will begin in 2007 with funding by NINDS.  This effort involves 25 co-investigators (and more than 50 other physicians, research nurses, informatics specialists, and others) based at 14 different institutions, and organized around the various scientific disciplines required for a study of this scale. 

The Potential for Curing Epilepsy

Dr. Lowenstein concluded his remarks with a focus on the enormous potential that patients, family members, healthcare providers, and scientists have for curing epilepsy by working together and by recognizing the deeper meaning of our efforts.  “Despite the frustration that you may share with me in our limited ability to reach the goal of ‘no seizures, no side effects’ in many of our patients, despite the enormity of the knowledge gap in epilepsy, despite the limits in funding for science in our nation at this moment, and despite the seemingly endless work that needs to be done, it is worth reflecting, for a moment, upon the true nature of the work in which we are involved, and what we will accomplish.”

Written by Jacki Gordon, PhD
Reviewed and edited by Steven Schachter, MD
December 4, 2006