The Canadian Epilepsy Alliance was formed in 1998 to address issues of national importance to people living with epilepsy, to share resources and leverage partnerships to help improve the overall quality of life for Canadians living with a seizure disorder. Our goal was to fulfill a need that wasn’t being met for those living with epilepsy and for the Canadian Epilepsy Alliance to become the voice representing the needs that clients conveyed to us from coast to coast.
When we formed in 1998 we developed a constitution, bylaws and applied for charitable status so we could become a national charity for Canadians with epilepsy. On April 28, 2000, representatives from epilepsy organizations from across the country met at the City Hall in Trois Rivieres, Quebec to officially launch the new Canadian Epilepsy Alliance/Alliance canadienne de L’épilepsie. We believed that as an alliance and working together would make us stronger than we could ever be alone in our efforts to enhance the quality of life for Canadians affected by epilepsy.
As part of the celebration, we launched a Canada-wide survey on what people affected by epilepsy see as their most pressing concerns. The survey results helped to direct our ongoing efforts and keep us in touch with the real life challenges of those living with epilepsy in Canada. Since then an additional survey was done to make sure our mandate and programs continued to address important issues for Canadians living with epilepsy.
The launch coincided with an International Postcard Campaign by the World Health Organization called “Out of the Shadows” This Campaign was supported by the International League against Epilepsy and the International Bureau for Epilepsy.
We established a toll-free number 1-866-EPILEPSY that would help clients get connected with the local agency in their community anywhere in Canada.
Committees were formed to address advocate for clients in relation to drug shortages
Purple Day Campaign nationally and internationally began to bring people together and help them feel more confident about talking about their seizure disorders. We have Purple Day ambassadors and events from Coast to Coast.
A new booklet series on various topics about epilepsy was created
Canada Wide Webinars were sponsored with guest speakers
In Ontario – The Queen’s Park event takes place every year
The Purple Day Act was passed identifying March 26 as a day for Epilepsy Awareness: http://laws-lois.justice.gc.ca/eng/acts/P-38.8/page-1.html
Collaboration of each local charity through the Canadian Epilepsy Alliance helped with information sharing programs and new materials to promote Epilepsy Awareness
A series of Public Service Announcements were created depicting different types of seizures and were aired on TV stations Canada wide.
Radio Ads and other forms of social media educational materials were created to provide educational information to the public