By Deron Hamel
TORONTO – Epilepsy Action Day has come a long way since 2009, when representatives from Ontario’s epilepsy support agencies began joining advocates from other epilepsy organizations at Queen’s Park to set up information booths, says Paul Raymond.
Raymond, Epilepsy Ontario’s executive director, notes that during the past five years Epilepsy Action Day has morphed into a strategic event that, along with initiatives from other organizations, has garnered significant results for the epilepsy-awareness movement.
For example, advocacy efforts stemming from a myriad of organizations and events like Epilepsy Action Day played a role in the recognition of a need for more research into neurological conditions. As a result, the province established the Ontario Brain Institute in 2010.
Another major accomplishment that has stemmed from Epilepsy Ontario and other organizations advocating for change in health-related policies was the passing of Ryan’s Law in April. Ryan’s Law guarantees that schoolchildren with asthma can carry inhalers at school in case of an emergency.
The law is named after 12-year-old Ryan Gibbons, who died in October 2012 after suffering a severe asthma attack during recess at school in Straffordville, Ont.
Given asthma’s prevalence in children – the Ontario Lung Association says about 20 per cent of children in the province have the condition – Ryan’s Law addresses key issues to ensure safety in Ontario schools.
But epilepsy is also prevalent in Ontario students, with an estimated 10,000 children and teens across the province living with the condition. Epilepsy Ontario has long taken the stance that children with epilepsy need to be able to have access to rescue medications, should they experience a seizure at school.
Thanks to the efforts of epilepsy-awareness advocates, this issue has been discussed with MPPs and policy makers at the last two Epilepsy Action Days.
Awareness events have also led to the proposed Provincial Strategy for Epilepsy Care, which aims to make epilepsy care centres with state-of-the-art facilities accessible provincewide. A portion of this year’s Epilepsy Action Day was geared towards ensuring adequate funding is available for the next stage of the strategy.
“What’s changed over the years with Epilepsy Action Day is that it is very specific now,” Raymond tells Voices of Epilepsy, when asked about the greatest changes he has seen at the event over the years.
“The messages are very clearly articulated; it’s very deliberate. Lots of time and effort goes into coming up with those messages and presenting them to MPPs. Epilepsy Action Day has evolved into a very strategic event as opposed to just an awareness event.”
About 30 people representing epilepsy agencies across Ontario were at Queen’s Park on Oct. 27 for Epilepsy Action Day 2015.
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