By Deron Hamel
TORONTO – Lynn Zeppieri says the greatest success she experienced at this year’s Epilepsy Action Day was helping MPPs and policy makers see the extent to which epilepsy affects Ontarians and helping them understand the need for interventions to minimize the impact of seizure disorders.
Zeppieri, the president of Epilepsy Peterborough and Area’s board, was at Queen’s Park during Epilepsy Action Day, an annual advocacy event where representatives from across Ontario 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.
There are approximately 90,000 people in Ontario living with epilepsy. About 15,000 of these people are under 17. This statistic opened the eyes of the MPPs and policy makers when they spoke with the approximately 30 delegates attending the Oct. 27 event, Zeppieri says.
“That’s a large number and they were shocked by that,” she told Voices of Epilepsy after the event. “They were shocked by the burden of epilepsy versus the resources available. There’s a huge gap between what’s available and the cost.”
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
While Zeppieri says she’s confident delegates got their message through to MPPs and policy makers, she notes that they need to continue the dialogue to ensure the needs of the epilepsy community are kept top of mind.
Delegates now plan to send letters to everyone they met with to thank them for their time. They will also be sending those they met with templates of letters that can be sent to the Ministry of Education and the Ministry of Health and Long-Term Care.
“We have great collaboration that’s happening with both of those ministries – they are working together and we want to make sure that continues, so we hope that they push forward with that collaboration to keep it rolling,” Zeppieri said.
“The goal is that now that we have met with them that we develop a bit of a relationship. Some of our delegates that are here today have been coming here for the last four or five years, so the relationships are developing.”
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