Community support Epilepsy Durham Region’s greatest success: executive director

November 1, 2012


Five-year-old Fayth Elizabeth is the ambassador for Epilepsy Durham Region’s Legacy campaign.

When you’re a small epilepsy support agency of two people, you need to know how to make the most of your available resources — and that’s exactly what Epilepsy Durham Region has done for 25 years.

The agency receives no government or United Way funding. Instead, Epilepsy Durham Region has built community relationships to educate people about epilepsy and the impact the neurological disorder has on people’s lives.

The engagement has paid off, says executive director Dianne McKenzie, noting the strong community support the agency has received since its establishment in 1987 has been its No. 1 success. This support, she adds, has helped the agency surpass its 25th anniversary fundraising goal, a key initiative in helping deliver services.

Last week, the agency marked 25 years of advocating for people living with epilepsy. Instead of throwing a party to celebrate the past quarter century, the agency decided to launch a campaign earlier this year to continue to raise money to provide vital supports.

Through this fundraising campaign, called Lora’s Legacy, the agency has raised more than $29,000 in 2012, surpassing its goal of $25,000. Money raised is being put towards three key initiatives: helping support the cost of medication, supporting the cost of medical appointments, and outreach programming.

It has been through the strong community support the agency receives that the campaign has been so successful, says McKenzie.

“People are truly committed to helping one another,” she says.

“We’ve had a lot of activities throughout the year and wherever we went we talked about what we were doing.

“We were very fortunate to have corporate citizens and people in general understand that epilepsy is a condition which is underfunded and misunderstood and surrounded by stigma, and they are willing to help. ”

There are eight municipalities in Durham Region, and the agency provides supports — and community engagement — to people living in each of these areas.

As executive director, McKenzie can be found providing in-services to educate people throughout the region about epilepsy and why epilepsy support agencies need funding and volunteers. She and outreach co-ordinator Jessica Scheffee also organize public education days that help get the word out.
Community engagement has been Epilepsy Durham Region’s greatest success in its first 25 years, but what about the next 25 years?

McKenzie says the agency still has a lot of work to do. While the communities the agency serves are engaged and people are lending their financial and volunteering support, epilepsy continues to have a negative stigma for people living with the disorder. This stigma can result in people with epilepsy struggling with employment issues or being denied insurance.

Stamping out this stigma is one thing the agency wants to play a part in doing during the next 25 years, says McKenzie, adding she’s willing to pay a big price to see people with epilepsy afforded the exact same life benefits as everyone else.

“(I would like) to be put out of business,” she says.

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Writer: Deron Hamel

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