Canadian Epilepsy Alliance/Alliance Canadienne d'Épilepsie
John G Phair
Concerned Canadians met last November in Toronto to discuss participation in the newly formed Canadian Epilepsy Alliance/Alliance Canadienne d'Épilepsie. Representatives were present from Epilepsy Newfoundland and Labrador, Epilepsy Nova Scotia, Épilepsie Mauricié/Centre du Québec, l'Association Québecoise de l'épilepsie, Épilepsie Montréal Métropolitan, several regions of Ontario, Epilepsy Manitoba, Epilepsy Calgary, the Edmonton Epilepsy Association, and the British Columbia Epilepsy Society. [Representation from Saskatchewan has now joined.]
All hold many matters in common, agreeing that: 1) our first priority must always be the interests of people affected by epilepsy; 2) we can and must work together to forge a useful and vibrant association; and 3) consensus must govern the workings of the new organization. A Mission Statement, Values and Operating Principles, and preliminary by-laws were composed. "The CEA/ACE is a partnership between grassroots epilepsy organizations, Canada-wide, dedicated to the promotion of independence, quality of life and full community participation of persons with and affected by epilepsy through innovative support services, advocacy, education and public awareness."
CEA/ACE aims to promote traditional, alternative and psychosocial research. CEA/ACE holds that people with epilepsy must have a meaningful role in and be able to make informed choices about their own healthcare management. CEA/ACE accepts/understands a broad definition of "health", including more than just the medical model. CEA/ACE affirms that all are equal within the law and must be afforded the same rights.
Accepted Operating Principles include: open communications; consensus; full and active participation of members; staff and volunteer partnership in decision-making; mutual respect; each person/organization of equal value; respect of differences; loyalty; mutual support and help; joint friendship; and, the freedom to "opt out" of CEA/ACE projects without fear of judgement.
Among other issues, CEA/ACE is working toward the development of: a presence on the Internet; educational, public awareness and advertising strategies and materials; Health Canada resources; special education and children's issues; seniors' services; accessibility issues; and a truly national Epilepsy Awareness campaign.
This new organization, based upon trust and openness, should become a powerful and focussed voice for all people affected by seizure disorders in Canada.
For more information, contact Geoff Bobb, Executive Director of the Epilepsy Association of Metro Toronto at geoffbobb@epilepsy.toronto.on.ca or 416-964-9095.
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