Deron Hamel
Epilepsy Ottawa is working to strengthen the agency to enhance its sustainability to better serve the thousands of people living with a seizure disorder in the Ottawa region and their families.
Diversifying the agency’s funding model, building upon strengths in its volunteer program and supporting ongoing initiatives are some of the ways Epilepsy Ottawa is working to accomplish its goal, says its new director, Nikki Porter.
The best possible outcome for the agency in the long term will be a sustainable funding model, a more engaged community and a strong capacity to connect with people upon diagnosis of a seizure disorder, Porter says.
Ultimately, the best possible outcome for the agency in the long term would be to have a sustainable funding model, a more engaged community and a strong capacity to connect with people upon diagnosis of a seizure disorder, Porter says.
“Our new direction is (about) keeping the big picture in mind to create a sustainable agency … and working to make the agency stronger and help it grow,” she tells Voices of Epilepsy.
As Canada’s capital and Ontario’s second-largest city, Ottawa is “rich with opportunities” to raise epilepsy awareness and reach people. These factors, she says, will help Epilepsy Ottawa achieve its sustainability mission and to better serve people with epilepsy and their families.
For instance, there is a strong volunteer base, and the agency is in the process of rebuilding its volunteer program. Porter has connected with Volunteer Ottawa, an organization connecting volunteers to volunteer needs, and, as a result, Epilepsy Ottawa has received many applications “from really strong candidates.”
“The quality of volunteers is amazing,” she says.
Porter has a long history of working with the province’s epilepsy community. She has worked for Epilepsy Ontario as project manager on the Ontario Trillium Foundation-funded project From Isolation to Inclusion, which is tasked with building the capacity of community epilepsy agencies across the province. She has also held a dual role with the Epilepsy Support Centre as public education co-ordinator for Windsor and communications liaison for southwestern Ontario.
Her experience has provided her with a strong perspective of the needs, strengths and opportunities for the epilepsy support community.
“I’ve been looking at the best programs across the province; I’ve been reviewing what works well and what are still challenges for agencies,” she says.
“I’m so very pleased to announce that Nikki Porter has joined us as the director of Epilepsy Ottawa,” Peter Andrews, the chair of Epilepsy Ottawa’s board of directors, says in a written statement. “She is highly motivated, skilled in a multitude of areas, and well-connected to the epilepsy community across Ontario.”
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The first step in this process is gathering people’s stories – both positive and negative – to generate a big picture of people’s experience with first responders after having a seizure.
Fifteen-year-old Nicholas had his first tonic-clonic seizure at seven. In 2009, Nicholas was diagnosed with epilepsy. During the next several years his condition became increasingly severe. He was experiencing tonic-clonic seizures lasting up to five minutes. At one point, Nicholas began having 20 to 40 absence seizures per hour.
