North America Report

North America Report to the International Executive Committee

Prepared by: Mary Secco, Canada Epilepsy Alliance

Membership:

The WHO regional breakdown identifies 12 countries in North America. To date, 3 are full members of the IBE. These are the United States, Canada and Jamaica. There has been limited contact with a fourth potential member, Trinidad in the West Indies. There are currently 2 associate members in North America: the Anita Kaufmann Foundation and the Epilepsy Association of New Jersey.

In 2007 Epilepsy Canada was replaced by the Canadian Epilepsy Alliance as the full member representing Canadians living with epilepsy.

Regional Meetings:

Due to the limited number of members in North America, there is no elected regional executive committee. Instead, representatives from the IBE member associations meet informally at professional development meetings and communicate largely through email and telephone.

North American Initiatives:

 The aim of the Anita Kaufmann Foundation is to educate the public about epilepsy, both through programs initiated by the foundation and through grants to other organizations undertaking similar programs. One of the programs the foundation runs is an educational epilepsy first aid program for 5th grade students. This program is available in many schools in Canada, Israel, New Jersey and Florida.  The Anita Kaufmann Foundation and the Canadian Epilepsy Alliance have partnered to promote “Purple Day for Epilepsy”. “Purple Day for Epilepsy” is March 26th. Founded in 2008, by nine-year-old Cassidy Megan of Nova Scotia, Canada, this grassroots effort dedicated to increasing awareness about epilepsy was celebrated in hundreds of schools, workplaces, urban and rural centers around the world. The movement began when Cassidy gave a speech and asked her entire school to wear purple on March 26th. She called her Member of Parliament and he wore purple and told the legislature that it was to celebrate epilepsy. Purple day proclamations were read in legislatures in Canada and around the world. A face book site increased awareness and an internet site logs participation. The website: www.purpleday.org was created and provides details on how to become involved in this annual event.  Continued professional development opportunities and meetings with the Canadian League against Epilepsy, ILAE and the American Epilepsy Society to improve our network, communication, partnerships and access to care.  Continued funding for Promising Strategies.  Increasing the North America membership in the IBE.  “Talk about It” Campaign –this virtual campaign uses celebrities to promote disclosure and to provide authoritative information about epilepsy.  Police/EMT Training Program to ensure that people with epilepsy receive an appropriate and compassionate first aid response.  Senior Neuroscience Teaching Unit –A team of Canadian neurologists, teachers and university students have been writing and pilot testing a teaching unit for senior science biology students for the past three years. The complete interactive unit can be taught in 160 minutes. The unit includes seizure videos, cell biology animation, career links, labs and case studies. The goal of the unit is to introduce epilepsy as a career choice to future health scientists. The teacher text and DVD will be published in August 2009 in Canada and will be available in the United States in November 2009. Single copies will be available upon request from any IBE member.  Epilepsy Foundation’s Mood Disorders Initiative has composed a Consensus Statement: The evaluation and treatment of people with epilepsy and affective disorders. The Consensus Statement will be used to improve the recognition and treatment of affective disorders in people with epilepsy. Epilepsy and Mood Disorders information booklets are available for people with epilepsy and their health care providers.  A series of six, 30 second television commercials (public service announcements) have been created by the Canadian Epilepsy Alliance. Topics include seizure first aid, recognizing different seizures (complex partial and absence), discrimination in the workplace and seniors with seizures.  Several vocational training programs are available in different countries to help people with epilepsy to gain the skills and self confidence to enter the workforce.  Websites, brochures, manuals and thematic newsletters are available in English, French and Spanish.  The Jamaican Epilepsy Association has produced a children’s book and a celebrity calendar.  The Jamaican Epilepsy Association manages a video-EEG unit. The Centre is the first of its kind in the English-speaking Caribbean. This lay organization has also set up a financial fund to help patient’s access treatment.