By Deron Hamel
TORONTO – This year’s Epilepsy Action Day successfully sent a message to Ontario’s MPPs and policy makers that “epilepsy matters and people with epilepsy matter,” says Paul Raymond, Epilepsy Ontario’s executive director.
About 30 people representing epilepsy agencies across Ontario were at Queen’s Park on Oct. 27 for Epilepsy Action Day, an annual advocacy event where the representatives convene to mobilize their efforts into meetings with politicians to provide them with a better understanding of the challenges people living with seizure disorders face and to offer solutions to minimize epilepsy’s impact.
Each Epilepsy Action Day has a different theme but the goal is always the same: educate government officials about the challenges Ontarians living with epilepsy face and encourage them to take action to create policies that improve quality of life for the almost one in 100 people affected by the condition.
This year’s Epilepsy Action Day had three main points to make to MPPs and policy makers:
– The need for all Ontarians with epilepsy to have access to seizure control
– To ensure adequate funding is available for the next stage of the provincial epilepsy strategy
– To encourage MPPs to support advocacy efforts for students with epilepsy in Ontario schools, which was the main theme behind last year’s Action Day
“The feedback from most of the meetings was positive. Did we accomplish what we wanted? I think we worked towards that,” Raymond told Voices of Epilepsy after the meetings finished.
“It was definitely a step in the right direction. We had a variety of meetings today; some were with MPPs who knew nothing about epilepsy, so this was an opportunity to educate and create awareness.
“We met with other MPPs and it was their fifth or sixth year of meeting with us, so the conversation becomes centred around what’s new, what has the government done and what have we done as Epilepsy Ontario. We have been able to talk about a lot of successes.”
Raymond says what gives him the most hope stemming from the event is that there is now an increased awareness and increased understanding from government that epilepsy is an important issue and that people with epilepsy have stories to tell and need to be heard, he said.
“I think we got that acknowledgement through a lot of these meetings,” he said. “We produced some data and people had no idea that the incidence of epilepsy was that high and that the financial support for epilepsy is that low. We created a couple of really great ‘a-ha’ moments.”
Epilepsy Action Day also helps the epilepsy community hold MPPs accountable. Now that representatives from epilepsy support agencies have met with MPPs they can go back to them and ask for follow-through on promises, Raymond says.
“Now that we’ve had this type of event, we can go back to the MPPs and articulate exactly what we want them to support.”
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