- Email: [email protected]
From the Epilepsy Foundation
Epilepsy & Behavior Epilepsy & Behavior 3 (2002) 487–488 www.academicpress.com
Editorial
From the Epilepsy Foundation Last September, the Epilepsy Foundation held its National Conference in New Orleans. It was a successful conference, drawing close to 550 attendees. It brought together representatives of the nationwide network of Epilepsy Foundations which serve their local communities and individuals and families living with epilepsy in search of information to help them deal more effectively with this condition in their daily lives. What distinguished this conference, however, was the fact that it was preceded by a two-day Leadership Workshop on International Capacity Building, delegates from which also attended conference sessions. The workshop was funded by an educational grant from the Pfizer Foundation and was jointly sponsored by the Epilepsy Foundation and the International Bureau for Epilepsy. It was designed to build capacity through technological exchange among international epilepsy groups and organizations, primarily from the developing world. Thirty countries were represented, joined by some local Epilepsy Foundations. Countries and areas represented at the meeting included Indonesia, South Africa, Senegal, Zimbabwe, India, Canada, Malta, China, Taiwan, Israel, Australia, Ethiopia, Chile, Denmark, Russia, Guatemala, and Mexico. And we all learned a lot from each other—organizing techniques, communication strategies, approaches to fund raising, ways to press governments to achieve social change, how to build networks and recruit volunteers—all the mechanisms that drive patient groups and nongovernmental organizations around the world. But what was striking about both the international workshop and a number of sessions at the Epilepsy Foundation conference that followed it was how similar the issues are—all over the world. Improving access to effective treatment and closing the treatment gap between numbers affected and numbers receiving treatment were major concerns of many of the international visitors, but underlying those, and to a degree responsible for them, was the huge, universal problem of how society responds to epilepsy. There was also a striking similarity in the programs and related activities with which organizations from Sydney to Singapore, Kenya to Kansas, are approaching these problems, often with very limited resources. In Indonesia, for example, the primary areas of concern are
epilepsy and women, youth, law, discrimination in employment, and driving. Not too different from the primary concerns of the Epilepsy Foundation. The Indian Epilepsy Association in Bombay is focused on educational programs in the schools, securing disability benefits for people with epilepsy, and family counseling (because ‘‘often the family members suffer more stress than the person with epilepsy’’). In Brazil the emphasis is on patient and public education, presentations in schools, and strengthening patient self-esteem. The Epilepsy Support Association of Ethiopia is working with government ministries to produce educational materials for patients, families, school communities, and the general public, and to develop treatment guidelines for use at the primary health care level. In Singapore the Epilepsy Care Group runs an Epilepsy Wellness Program to aid psychosocial adjustment and a PACES (Parents & Children Epilepsy Support) program focusing on the psychosocial development of children with epilepsy. The Denmark Epilepsy Association is trying to improve public awareness by encouraging people with epilepsy in that country to be more open about having the condition. In Hong Kong, a series of ‘‘psychoeducational selfhelp courses’’ for parents of teenagers and children with epilepsy, as well as adults, is designed to increase understanding and promote coping capacity and positive thinking among patients and family members. Graduates move on to join self-help groups. A recent Hong Kong survey found that ‘‘fear of loss of family fame’’ was a critical issue for people with epilepsy. The stated aims of Epilepsy Action Scotland are that people with epilepsy will receive high standards of medical care, will not experience discrimination and stigma, and, with their caregivers, are able to access information and support. The name of a Mexican advocacy group is Group ‘‘Acceptation’’ of Epileptics. In Israel, a popular childrenÕs book, in which the protagonist has epilepsy, is used as a way to open discussions of negative attitudes toward epilepsy among schoolchildren. Again and again, the focus of the work from one country to the next is to combat the poisonous effects of social attitudes. These snippets do not do justice to the hard work and dedication they represent. What they do, however, is to
1525-5050/02/$ - see front matter Ó 2002 Elsevier Science (USA). All rights reserved. PII: S 1 5 2 5 - 5 0 5 0 ( 0 2 ) 0 0 5 6 1 - 9
488
Editorial / Epilepsy & Behavior 3 (2002) 487–488
underscore once again the universality of the issues that people with epilepsy, their families, and their caregivers face in social settings. For the past 5 years the international epilepsy community, composed of the Bureau (of which the Epilepsy Foundation is a member), the International League Against Epilepsy (of which the American Epilepsy Society is the American branch), and the World Health Organization, has been sponsoring a Global Campaign Against Epilepsy to combat these problems. With the theme of ‘‘Out of the Shadows,’’ it is supporting a range of activities to improve the acceptability, treatment, services, and prevention of epilepsy worldwide. The Epilepsy FoundationÕs Leadership Workshop on International Capacity Building offered some fine examples of the enormous challenge that the Global Campaign has taken on and of the dedication
and commitment of the epilepsy groups that are fighting for change and acceptance in big cities and small villages throughout the world. The Epilepsy Foundation was privileged to host this meeting and extends its thanks to all participants and especially to the members of its planning committee: Keith Roberts (Australia); Dr. Carlos Acevedo Schwatzmann (Chile); Hilary Mounfield (Scotland); Dr. Amadou Gallo Diop (Senegal); Dr. Marshal Mo-Song Hsi (Taiwan); and Philip Lee (United Kingdom). The Epilepsy Foundation 4351 Garden City Drive Landover, MD 20785 USA E-mail address: [email protected] (A. Scherer)
Editorial
From the Epilepsy Foundation Last September, the Epilepsy Foundation held its National Conference in New Orleans. It was a successful conference, drawing close to 550 attendees. It brought together representatives of the nationwide network of Epilepsy Foundations which serve their local communities and individuals and families living with epilepsy in search of information to help them deal more effectively with this condition in their daily lives. What distinguished this conference, however, was the fact that it was preceded by a two-day Leadership Workshop on International Capacity Building, delegates from which also attended conference sessions. The workshop was funded by an educational grant from the Pfizer Foundation and was jointly sponsored by the Epilepsy Foundation and the International Bureau for Epilepsy. It was designed to build capacity through technological exchange among international epilepsy groups and organizations, primarily from the developing world. Thirty countries were represented, joined by some local Epilepsy Foundations. Countries and areas represented at the meeting included Indonesia, South Africa, Senegal, Zimbabwe, India, Canada, Malta, China, Taiwan, Israel, Australia, Ethiopia, Chile, Denmark, Russia, Guatemala, and Mexico. And we all learned a lot from each other—organizing techniques, communication strategies, approaches to fund raising, ways to press governments to achieve social change, how to build networks and recruit volunteers—all the mechanisms that drive patient groups and nongovernmental organizations around the world. But what was striking about both the international workshop and a number of sessions at the Epilepsy Foundation conference that followed it was how similar the issues are—all over the world. Improving access to effective treatment and closing the treatment gap between numbers affected and numbers receiving treatment were major concerns of many of the international visitors, but underlying those, and to a degree responsible for them, was the huge, universal problem of how society responds to epilepsy. There was also a striking similarity in the programs and related activities with which organizations from Sydney to Singapore, Kenya to Kansas, are approaching these problems, often with very limited resources. In Indonesia, for example, the primary areas of concern are
epilepsy and women, youth, law, discrimination in employment, and driving. Not too different from the primary concerns of the Epilepsy Foundation. The Indian Epilepsy Association in Bombay is focused on educational programs in the schools, securing disability benefits for people with epilepsy, and family counseling (because ‘‘often the family members suffer more stress than the person with epilepsy’’). In Brazil the emphasis is on patient and public education, presentations in schools, and strengthening patient self-esteem. The Epilepsy Support Association of Ethiopia is working with government ministries to produce educational materials for patients, families, school communities, and the general public, and to develop treatment guidelines for use at the primary health care level. In Singapore the Epilepsy Care Group runs an Epilepsy Wellness Program to aid psychosocial adjustment and a PACES (Parents & Children Epilepsy Support) program focusing on the psychosocial development of children with epilepsy. The Denmark Epilepsy Association is trying to improve public awareness by encouraging people with epilepsy in that country to be more open about having the condition. In Hong Kong, a series of ‘‘psychoeducational selfhelp courses’’ for parents of teenagers and children with epilepsy, as well as adults, is designed to increase understanding and promote coping capacity and positive thinking among patients and family members. Graduates move on to join self-help groups. A recent Hong Kong survey found that ‘‘fear of loss of family fame’’ was a critical issue for people with epilepsy. The stated aims of Epilepsy Action Scotland are that people with epilepsy will receive high standards of medical care, will not experience discrimination and stigma, and, with their caregivers, are able to access information and support. The name of a Mexican advocacy group is Group ‘‘Acceptation’’ of Epileptics. In Israel, a popular childrenÕs book, in which the protagonist has epilepsy, is used as a way to open discussions of negative attitudes toward epilepsy among schoolchildren. Again and again, the focus of the work from one country to the next is to combat the poisonous effects of social attitudes. These snippets do not do justice to the hard work and dedication they represent. What they do, however, is to
1525-5050/02/$ - see front matter Ó 2002 Elsevier Science (USA). All rights reserved. PII: S 1 5 2 5 - 5 0 5 0 ( 0 2 ) 0 0 5 6 1 - 9
488
Editorial / Epilepsy & Behavior 3 (2002) 487–488
underscore once again the universality of the issues that people with epilepsy, their families, and their caregivers face in social settings. For the past 5 years the international epilepsy community, composed of the Bureau (of which the Epilepsy Foundation is a member), the International League Against Epilepsy (of which the American Epilepsy Society is the American branch), and the World Health Organization, has been sponsoring a Global Campaign Against Epilepsy to combat these problems. With the theme of ‘‘Out of the Shadows,’’ it is supporting a range of activities to improve the acceptability, treatment, services, and prevention of epilepsy worldwide. The Epilepsy FoundationÕs Leadership Workshop on International Capacity Building offered some fine examples of the enormous challenge that the Global Campaign has taken on and of the dedication
and commitment of the epilepsy groups that are fighting for change and acceptance in big cities and small villages throughout the world. The Epilepsy Foundation was privileged to host this meeting and extends its thanks to all participants and especially to the members of its planning committee: Keith Roberts (Australia); Dr. Carlos Acevedo Schwatzmann (Chile); Hilary Mounfield (Scotland); Dr. Amadou Gallo Diop (Senegal); Dr. Marshal Mo-Song Hsi (Taiwan); and Philip Lee (United Kingdom). The Epilepsy Foundation 4351 Garden City Drive Landover, MD 20785 USA E-mail address: [email protected] (A. Scherer)