The announcement of a proposed provincial epilepsy strategy, funding for epilepsy research and bringing in an epilepsy information specialist are some of the major successes Epilepsy Ontario saw in 2012, says Epilepsy Ontario executive director Rozalyn Werner-Arcé.
Perhaps the biggest news impacting Ontario’s epilepsy community in 2012 was the announcement of a proposed provincial epilepsy strategy to help the one in 100 Ontarians living with the neurological disorder address challenges that come with treating the disorder.
As part of the strategy, epilepsy care centres with state-of-the-art equipment would be established provincewide and would serve as primary access points for people with epilepsy.
Through these facilities, patients would have access to epileptologists, psychologists and social workers. The sites would be equipped with the latest in epilepsy monitoring and imaging equipment.
“People living with epilepsy responded in droves — resounding demonstration of the need for the strategy,” says Werner-Arcé.
“This is the biggest thing that has ever happened to the epilepsy community in Ontario, and if the provincial government approves, it will give people equitable access to evidenced-based quality care wherever they live in Ontario.
At the beginning of the year, the Ontario Brain Institute (OBI) announced funding for several, multifaceted epilepsy research projects focused on garnering clinical results. New medications, breakthrough diets and brain stimulation are some of the more than 20 areas researchers are studying.
The projects have been underway since spring and are bringing together Ontario’s top researchers, clinicians and patient advocacy groups, which is maximizing resources aimed at helping people with seizure disorders. (Click here to read about some of the findings)
“At the end of our second quarter everybody was on track toward meeting their milestones, and we’re pretty happy about that,” Dr. McIntyre Burnham, director of the University of Toronto Epilepsy Research Program and co-director of the OBI-Epilepsy Research Project, said recently.
In April, Epilepsy Ontario welcomed epilepsy information specialist Suzanne Nurse to the organization. Creating this position marked a milestone for Epilepsy Ontario, says Werner-Arcé, noting that Ontarians living with epilepsy now have access to an expert who can help them better navigate the health-care system and connect them to local support agencies.
“Thanks to technology, (Nurse) is also able to provide support to families, teachers and employers in the far-flung regions of the province,” says Werner-Arcé.
But these weren’t the only successes Epilepsy Ontario saw in 2012. Other important milestones include Epilepsy Ontario providing eight scholarships to deserving high-school students living with epilepsy this summer, re-engaging with epilepsy agencies and the move into a more affordable and centrally located head office.
Werner-Arcé extends her thanks to the people she has worked with this year.
“It has been a pleasure to get to know and work alongside so many dedicated and committed volunteers and staff,” she says. “I’m looking forward to working together in 2013 to improve the quality of life of people who live with epilepsy.”
Please click here if you would like to make a donation to Epilepsy Ontario this holiday season.
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Writer: Deron Hamel
