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Dad and daughter hope their awareness run sparks change

July 26, 2012

Trevor Lewis says he hopes the upcoming Run for Epilepsy he and his daughter, Katie, are organizing will help raise awareness about epilepsy in the community and possibly act as a catalyst for establishing an epilepsy agency in his hometown of Thunder Bay.

Trevor notes that there’s a great need for more available resources for northern Ontarians living with epilepsy, and this year’s run could help set the wheels of change in motion through awareness and community engagement.

The idea for the Aug. 19 run was sparked by Katie in 2010. After watching her dad train for and compete in a run to raise money for a local children’s music festival that year, she asked Trevor if the pair could train together for a run to raise money for Epilepsy Ontario.

Trevor and Katie, who are both living with the neurological disorder, then contacted former Epilepsy Ontario executive director Dianna Findlay to get permission to run under the Epilepsy Ontario name, which she granted.

The father-and-daughter team then launched a Facebook page to garner attention. They began training in February 2011 for the Thunder Bay Marathon, which was taking place in September. The run allows participants to raise money for the cause of their choice.

Initially, Trevor says he and Katie thought they might get about 60 people “liking” the Facebook page — and that their fans would be mostly friends and family members.

By the time the big event came on Sept. 18, the page had more than 1,000 likes from people in more than 20 countries.

The Facebook page also helped Trevor and Katie get 25 more runners on their team. Team Epilepsy Ontario raised almost $8,000.

“We had people, not just from Thunder Bay, but also from Manitoba and southern Ontario, coming up to join us, so it reached out to quite a few people and made quite a big difference,” says Trevor.

“It was much bigger than Katie and I had ever dreamed.”

After Trevor and Katie’s success in the Thunder Bay Marathon, the Running Room contacted them to discuss collaborating to launch a run dedicated solely to raising money for epilepsy causes.

And all this started from Katie’s idea.

“It’s pretty neat,” says Katie, 18, when asked how it feels to have been the one to initiate what would become the Run for Epilepsy. “I thought it would only be just a couple people.”

Katie adds her grandparents will be visiting from southern Ontario during this year’s run, and that she’s looking forward to having them there to cheer for her and her dad.

Although the event is called a “run,” Trevor underscores that participants can also walk, rollerblade, skateboard or bicycle the distance.

“There’s no need for anyone to feel that they cannot come out and participate,” he says.

The Run for Epilepsy takes place Aug. 19 at Chapples Park in Thunder Bay and starts at 9 a.m. Participants can run either the 2.5-kilometre or five-kilometre events.

You can learn about the event, including how to register, by visiting the Run for Epilepsy website. Click here to join the Run for Epilepsy Facebook page.

If you have feedback on this story, please contact the newsroom at 800-294-0051, ext. 23, or e-mail deron(at)axiomnews.ca, or leave a comment below.

Writer: Deron Hamel

Provincial strategy could create a stronger epilepsy community

July 20, 2012

Gerry Cockburn says one of the greatest possibilities that could stem from a provincial epilepsy strategy would be a stronger sense of community created amongst people living with epilepsy and medical professionals who treat the neurological disorder.

Cockburn, a 55-year-old retired educator, has had epilepsy since he was 10. He says one of the things lacking for many people living with epilepsy has long been a sense of connectivity.

The proposed provincial strategy, which was recently developed by epilepsy experts and is now under review by the Ministry of Health and Long-Term Care, would be a start to helping build a stronger community, says Cockburn, who lives in Milton.

If the proposal is approved by the ministry, people living with epilepsy would have access to an evidence-based system with equitable and timely access to treatment.

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 living with epilepsy.

Through these facilities, patients would have access to epileptologists, psychologists and social workers.

These factors add up to more supports, both medically and interpersonally, says Cockburn.

“The big piece here is having community of people coming together that can help people who, after they have been diagnosed with epilepsy, are able to access the services,” he says.

“It’s not just neurologists, it’s not just social workers, it’s a community of people. And a system like this would also attract people like myself to try and help other people.”

A strongpoint of the strategy is that it not only includes medical practitioners but also social workers, psychologists and agencies that can help connect people with others who are living with epilepsy, says Cockburn.

A provincial strategy would also help new Canadians affected by the disorder make the connections within the epilepsy community they need.

Cockburn says it can be challenging for people affected by epilepsy who have lived in Ontario all their lives to find needed medical treatment and supports. But for people who move to the province from outside of Canada, searching for services can be even more challenging if they don’t know where to look.

“And (new Canadians) often don’t know the routes to follow for their children or (for themselves),” says Cockburn.

If you have feedback on this story, please contact the newsroom at 800-294-0051, ext. 23, or e-mail deron(at)axiomnews.ca, or leave a comment below.

Writer: Deron Hamel

Strategy would bring relief to northern Ontarians living with epilepsy

July 12, 2012

While a provincial epilepsy strategy would help people affected by the neurological disorder access services in a timely manner, it would be especially beneficial to people living in northwestern Ontario, who often must travel long distances to receive treatment, says Trevor Lewis.

Lewis and his 18-year-old daughter Katie live in Thunder Bay. They are both living with epilepsy and are familiar with the challenges that come with needing access to specialists. And they are not alone. Lewis notes there are many people living in northern Ontario who have epilepsy that would benefit from the proposed strategy.

As part of the proposed strategy under review by the Ministry of Health and Long-Term Care, epilepsy care access centres would be established across Ontario, including one in the north.

Lewis says this would eliminate a significant challenge for people living with epilepsy in the region.

“There are no epileptologists here. Currently, there are a couple of neurologists in Thunder Bay (but) none of them have epilepsy as their specialty,” says Lewis, adding that while these neurologists are excellent doctors, without specific epilepsy training they can only do so much.

“There are gaping big holes here in northern Ontario. There is a huge need in Thunder Bay and across the whole northwest region,” says Lewis.

“It’s really good that they’re looking at putting some kind of regional centre like that somewhere in northern Ontario where there will be epileptologists, where there will be the advanced monitoring, and just a place where people know they can go to get help from people that have specialized education in that area.”

At the moment, there is access to specialists in southern Ontario via videoconferencing, but appointments are short and people often cannot fit in the time they need to discuss their medical issues, says Lewis, adding people need to see live doctors.

If the provincial epilepsy strategy is approved by the ministry, people living with epilepsy would have access to an evidence-based system with equitable and timely access to treatment.

As part of the proposed 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.

Lewis and his daughter organized the Run for Epilepsy fundraiser in 2011 (keep reading Voices of Epilepsy to see a story on this in coming weeks), and they created a Facebook page to complement the event.

To illustrate the need for more services in the north, Lewis says there has been an outpour of engagement through the social networking site from people in the region who are living with epilepsy and seeking improved access to treatment.

“People are reaching out to us, and we’re just a father and daughter who ran in the name of epilepsy,” says Lewis.

If you have feedback on this story, please contact the newsroom at 800-294-0051, ext. 23, or e-mail deron(at)axiomnews.ca or leave a comment below.

 

Writer: Deron Hamel

People affected by epilepsy asked to take important survey

July 5, 2012

People living with epilepsy and their families have been asked to participate in an important research project that could have great impact on helping attract government funding in areas to enhance the lives of those affected by the neurological disorder.

Researchers were accepting input from adults aged 17 and older who are living with epilepsy, as well as parents of children with epilepsy aged five to 16, to participate in a survey largely focused on discovering what challenges people with epilepsy are facing in their daily living.

The call for submissions ended July 1.

“There is very little known about the impact on the day-to-day life of people with epilepsy — here is our chance to document that in a study that will be published,” says Mary Secco, executive director of the Epilepsy Support Centre in London, Ont.

Secco says that other neurological disorders — Alzheimer’s and Parkinson’s disease, for example — have documentation noting their impact on the daily lives of people, and epilepsy needs to have similar documentation.

“This is really critical. If we don’t have the documentation — and it exists for other neurological conditions — we’re in trouble,” she says.

“If we can document the burden that we know exists on the families, but we’ve not been able to articulate in the literature, it gives us an opportunity to appeal to donors (and) to government to support people with epilepsy.”

One question directed at parents might be, “Is your ability to get paid work impacted by caring for your child?” Another question could be, “Does having epilepsy impact your ability to get a job or to get a driver’s licence?”

The study’s aim is to learn more about people living with a neurological condition and how it impacts their everyday lives. The answers received will help government better understand the impact epilepsy has on people from medical and personal perspectives, notes Secco.

The survey is a component of the Everyday Experience of Living with and Managing a Neurological Condition Study (LINC study), a national research project being conducted by scientists from Dalhousie University, the University of Manitoba, Memorial University, the University of Prince Edward Island and Queen’s University.

Researchers are aiming to engage about 300 people in the epilepsy portion of the study, which will include a short-term analysis, as well as a long-term look at families during the course of several years.

“This is important to a condition like epilepsy, which is episodic — a family could be doing very well one month and very poorly the next month,” says Secco.

The LINC study is part of the National Population Health Study of Neurological Conditions, a collaboration between the Neurological Health Charities of Canada and the Public Health Agency of Canada.

If you have feedback on this story, please call the newsroom at 800-294-0051, ext. 23, or e-mail deron(at)axiomnews.ca.

Writer: Deron Hamel

NOTE – This version corrects an earlier version to inform readers that the call for submissions to the survey ended July 1.