Epilepsy Ontario has received funding from UCB Canada Inc. to host a tour of the documentary On the Edge: Living with Epilepsy, which delivers unique insight into what it’s like to live with a seizure disorder. A UCB Canada representative says the organization hopes the film will inspire people to become more accepting of those living with seizure disorders.
On the Edge was written and directed by Louis Stanislaw, a U.S. filmmaker who has coped with epilepsy his whole life. The film tells the painful truths, misunderstandings and difficulties of living with epilepsy at every turn; from family life to school, to leaving home, and starting a career and forming lasting bonds.
Perhaps most importantly, the film puts faces to the condition, which is meant to inject a better sense of empathy into those listening to the many personal stories told.
The documentary made its Canadian premiere last October to much fanfare from the epilepsy community and the UCB funding will help Epilepsy Ontario host screenings in Ottawa (May 21), Whitby (June 5) and London (date TBC).
UCB Canada CNS business unit director Ross Glover says the organization wanted to support Epilepsy Ontario’s mission to help people gain a better understanding of what epilepsy is and the challenges people with the condition face.
If more people understood what epilepsy is and knew more about the challenges those living with the condition face there would likely be more acceptance, Glover says. This would lead to people with epilepsy being able to participate in society at a greater level, he adds.
“We really support Louis Stanislaw’s vision in this film that epilepsy is misunderstood and misperceived by many people, and that there is lots of societal understandings of epilepsy that are incorrect,” Glover tells Voices of Epilepsy. “There is a lot of educational need for people to understand what epilepsy is (so they can) provide empathy and understanding.”
UCB Canada is focused on developing medicines and solutions to enhance the lives of people living with severe central nervous system and auto-immune diseases. Given UCB Canada’s mission, Glover says it’s important to the organization to take hold of this opportunity to increase society’s understanding of epilepsy.
“We see this as part of our role as leaders in epilepsy (research) to make sure that there is a great deal of attention paid to how epilepsy is perceived in our country,” he says.
Having seen the documentary, Glover says he can attest to the film’s power through the insight it provides.
“I felt like I had been involved in somebody’s personal experience; I felt like I could understand what it was like for people with epilepsy to have not just a level of frustration, but also the ambition to make a change,” he says.
“I also felt the optimism that there is an opportunity to create change. … And that’s what we’re trying to do with the film; to get people to recognize that they can help and to not underestimate the contribution they can make. We’re hoping (the film) will inspire people.”
Writer: Deron Hamel
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