KITCHENER — A Kitchener-based organization focused on supporting people with epilepsy hopes to expand its reach with a new office and new partnership.
Epilepsy South Central Ontario opened its new Kitchener office in May, after the merger early this year of the local organization and another epilepsy group based in Mississauga that serves Halton, Peel and Hamilton.
“It’s like a whole new agency,” said Jennifer Lyon, chief operating officer.
Thanks to the alliance, the Kitchener office — which serves Waterloo Region and Guelph — can offer new programs aimed to help people with epilepsy lead full, independent lives.
“It’s just been a wonderful partnership working with more people,” Lyon said.
“Now we have actual programs to deliver to people in the community.”
Before, as a single-staff organization, the focus was on client support and fundraising with the help of volunteers and university student placements. The nonprofit agency relies on fundraising, grants and donations.
Now staff will be shared to run the programs, which are free.
A new youth empowerment program will offer life skill building and fun activities to encourage the youth to get out into the community.
The clinic to community program provides the newly diagnosed with information and connects them to programs and support.
“To be diagnosed with epilepsy is a life-changing thing,” Lyon said.
There are also support groups locally, and a family and youth retreat will be held in September in Mississauga with a focus on health and wellness.
The new Kitchener office is on Louisa Street near St. Leger Street, more centrally located and accessible than the previous one in the Bridgeport area. There will be a grand opening in late September.
“I have had walk-ins already,” Lyon said.
This summer she’ll be out at community events to raise awareness about the agency and epilepsy. Lyon said there are many misconceptions about epilepsy and people often don’t know much about seizures, instead only thinking of falling to the ground with full-body convulsions.
“There are so many different types of seizures that look very different,” Lyon said. “It affects everyone differently.”
An absence seizure results in a blank stare usually lasting less than 10 seconds. Random, uncontrolled movements are also a type of seizure. Awareness may or may not be impaired, depending on the type of seizure.
“It’s very invisible until it’s very not invisible,” Lyon said of the disorder.
People with epilepsy — an estimated one in 100 in Canada — may avoid going into the community because they worry about what will happen if they have a seizure.
“Often, people feel very isolated,” Lyon said.
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