The 3rd Judith Hoyer Lecture in Epilepsy, December 2, 2005

The 3rd Judith Hoyer Lecture in Epilepsy, December 2, 2005

Epilepsy & Behavior 9 (2006) 377–378 www.elsevier.com/locate/yebeh Special Report The 3rd Judith Hoyer Lecture in Epilepsy, December 2, 2005 Opening...

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Epilepsy & Behavior 9 (2006) 377–378 www.elsevier.com/locate/yebeh

Special Report

The 3rd Judith Hoyer Lecture in Epilepsy, December 2, 2005 Opening Remarks Steny H. Hoyer a, Story C. Landis b

b,*

a Fifth Congressional District of Maryland, U.S. House of Representatives, Washington, DC 20515, USA National Institute of Neurological Disorders and Stroke, National Institutes of Health, Bethesda, MD 20892, USA

Received 10 August 2006; accepted 12 August 2006 Available online 26 September 2006

Abstract On December 2, 2005, Dr. Jeffrey L. Noebels presented the third lecture in a series highlighting the promise of epilepsy research. Opening remarks were provided by Dr. Story C. Landis, Director of the National Institute of Neurological Disorders and Stroke, and by Representative Steny Hoyer (D-MD). The lecture series is held in memory of Mrs. Judith Hoyer, an active member of the Board of Directors of the Epilepsy Foundation (EF) and the late wife of Rep. Hoyer. Mrs. Hoyer spent her life both helping families to cope with epilepsy and promoting research into a cure and a better quality of life for those with the disorder. The purpose of the lecture is to raise awareness of epilepsy among researchers and the public and provide intellectual stimulation that will encourage continuing progress toward finding a cure for epilepsy. Ó 2006 Elsevier Inc. All rights reserved. Keywords: Public lecture; NINDS; Congress; Patient voluntary organisations

1. Remarks by Story C. Landis, Ph.D., Director, NINDS, NIH NINDS is pleased to be one of the sponsors for the annual Judith Hoyer Lecture on Epilepsy. The enthusiasm and energy generated by these lectures grow exponentially each year, and the lecture delivered on December 2, 2005, by Dr. Jeffrey L. Noebels was no exception. The Hoyer Lecture Series was established in 2002 to highlight the promise of epilepsy research. The lectures are a little unusual because not only do our invited speakers introduce us to wonderful new science, but they also present exciting patient-related talks that give us a unique view on the issues of living with epilepsy. This combination of science and patient perspective makes this an unusual and very important series. The series was named after, and is held in memory of, Mrs. Judith Hoyer, an active member of the board of *

Corresponding author. Fax: +1 301 480 9172. E-mail address: [email protected] (S.C. Landis).

1525-5050/$ - see front matter Ó 2006 Elsevier Inc. All rights reserved. doi:10.1016/j.yebeh.2006.08.011

directors of the Epilepsy Foundation and the late wife of Representative Steny Hoyer (D-MD). Mrs. Hoyer spent her life helping others—helping her husband in his career, serving as an advocate for children’s access to education and health care, and promoting research into the development of better therapies and a better quality of life for those with epilepsy. The Institute is delighted to sponsor this series in partnership with the American Epilepsy Society, the Epilepsy Foundation, and Citizens United for Research in Epilepsy (CURE). We are grateful for the efforts of Suzanne Berry and Helene Weston of the AES; Sandy Finucane and Eric Hargis of the Epilepsy Foundation; and Jean Donalty and Susan Axelrod of CURE in the planning for this year’s Hoyer lecture. I’d also like to thank Dr. Steve Schachter, Editor of Epilepsy & Behavior, for offering to publish the lecture. Representative Hoyer and his colleagues in the House and Senate have consistently recognized the importance of biomedical research at NIH, and we acknowledge their many years of strong support. Now serving as the House

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Democratic Whip, the second ranking leadership position among House Democrats, Representative Hoyer plays a key role in helping House Democrats determine their legislative agenda and political strategy, as well as building support for the party’s positions and delivering the Democratic message both in Washington and nationally. Public service has always been at the center of Steny Hoyer’s professional life. He started by winning a seat in the Maryland Senate at the age of 27, and just a few years later, at the age of 35, he was elected President of the Senate, the youngest ever in state history. He is now serving his 13th term in the House of Representatives, representing the Fifth Congressional District of Maryland, the longest serving House member from southern Maryland in history. He’s been recognized by members on both sides of the aisle as an effective leader and a committed consensus builder who knows how to get things done. He’s widely recognized as a champion for federal employees, as a leader in education issues, and as a respected voice on human and civil rights. Representative Hoyer is perhaps best known for serving as the lead House sponsor for the historic federal election reform legislation, which President Bush signed into law in October 2002, and for guiding the landmark Americans with Disabilities Act to passage in 1990. 2. Remarks by Representative Steny H. Hoyer (D-MD) I want to thank NINDS and the other sponsoring organizations—the American Epilepsy Society, the Epilepsy Foundation, and Citizens United for Research in Epilepsy (CURE)—for all the work they are doing to find a cure for epilepsy. And my family and I are honored that they chose to create this important lecture series in the name of my wife Judy. Judy and I were married for 36 years. It would now be 44 years had she lived. In the mid-1980s, while we were at an event in Geneva, Switzerland, Judy was holding a coffee cup and it jumped out of her hand. We learned that she had had a small seizure, which frightened her greatly. From that point on, both she and I started to learn more about what epilepsy was and is. Shortly thereafter, my very close and dear friend Tony Coelho, Chairman of the Board of Directors of the Epilepsy Foundation and another strong advocate for epilepsy research and education, asked Judy to join the foundation’s national board. In addition to her work on behalf of those with epilepsy, Judy also devoted herself to helping advance the cause of improved education and health care for all children. Throughout my entire career I have simply stood on her shoulders. She was indeed the wind beneath my wings. Each year the Hoyer Lecture brings together diverse parties interested in epilepsy, both to discuss advances in scientific research and to share these advances with the

patient and caregiver advocacy community. It is critical that, as we make progress on the scientific and treatment fronts, we also communicate that progress to families and patients with this condition. We are in an extraordinary time in the history of medicine. More progress has been made in the last century in medicine than in all the millennia preceding it. That’s why it’s so important that we have a lecture series like this. Today, more than 2.7 million Americans have some form of the neurological condition known as epilepsy. Many more millions are affected by this condition because of its impact on family members, friends, and co-workers. Over the years, researchers have learned a great deal about epilepsy, including how it acts in the brain and the nature of the seizures that characterize it. They have also made advances in the availability of medicines and treatments to deal with the seizures and the side effects of treatments. We do not yet have a cure. But as biomedical research advances have been made, for example in the area of genetics, we now have new tools that give the millions of afflicted families hope for the day when there is a cure. For 23 years I have served on the House Appropriations Subcommittee on Labor, Health and Human Services. You may remember John Porter, who once led this committee, and who still is a tenacious advocate for increasing research funding at NIH. All those with an interest in epilepsy need to support his efforts on behalf of basic biomedical research at this time when the opportunities are extraordinary and when the possibilities for progress are almost limitless. NIH spends roughly a hundred million dollars a year on epilepsy-related research. There is also a $7.7 million program at the Centers for Disease Control and Prevention (CDC) that focuses on improving care and public awareness about epilepsy. And in the past couple of years, we’ve begun a $3 million demonstration project at the Health Resources and Services Administration (HRSA) to improve services for epilepsy patients in underserved and rural populations. This may represent relatively small dollars, but the payoff for individuals with epilepsy is enormous, and our entire country benefits as those individuals are empowered, encouraged, and enabled. I also believe that stem cell research affords us extraordinary possibilities if we pursue it. Historically, almost every breakthrough that science has made has concerned overturning in some way the status quo. I hope we continue on that line. Most of those in attendance at the December 2005 Hoyer Lecture have dedicated their careers to helping their fellow citizens who must cope with epilepsy on a daily basis. Thanks to their efforts, America is out in front in most areas of medical research on this disease, which benefits humankind globally. I thank all of you for what you do every day to improve the lives of those with epilepsy and the people who care for them.