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Conference an opportunity to share Cdn survey findings, learn about latest research

January 3, 2013

Epilepsy information specialist Suzanne Nurse says attending a recent U.S. conference was an opportunity to share a Canadian survey’s findings with colleagues across North America, as well as a chance to learn about new epilepsy research developments that will help her better serve Epilepsy Ontario’s stakeholders.

From left to right, CEA president Gail Dempsey; epilepsy information specialist Suzanne Nurse; Nicole Beauregard, who authored the poster “The Impact of Epilepsy on Daily Life”; Jim Smyth, manager of market access and government relations, UCB Canada; and Bob Tam, director of market access and government relations, UCB Canada. — From left to right, CEA president Gail Dempsey; epilepsy information specialist Suzanne Nurse; Nicole Beauregard, medical science liaison, UCB Canada; Jim Smyth, manager of market access and government relations, UCB Canada; and Bob Tam, director of market access and government relations, UCB Canada.

Nurse attended the American Epilepsy Society’s (AES) 2012 meeting, held in San Diego Nov. 30 to Dec. 4. to engage health professionals specializing in epilepsy. Nurse represented the Canadian Epilepsy Alliance, a national network of organizations focused on promoting independence and quality of life for people with epilepsy and their families.

At the meeting, Nurse also learned about the latest epilepsy research from Canadian and American colleagues and researchers from other countries such as Australia.

The survey, entitled The Impact of Epilepsy on Canadians, was the first of its kind to examine epilepsy’s impact on Canadians in both official languages. The survey identified three of the Canadian epilepsy community’s major needs:

– Improved public awareness and education
– Timely and regular access to specialized care and support
– Access to new and better treatments

The poster also highlighted the greatest challenges the 671 respondents cited:

– Lack of independence
– Negative impacts on social life
– Discrimination
– Maintaining employment
– Maintaining relationships

Information from the survey was presented on a large poster board the Canadian Epilepsy Alliance representatives brought with them to showcase at the event.

“The findings help to back up many other research studies that show epilepsy can have a significant impact on people’s lives and provide Canadian data about living with epilepsy,” explains Nurse, when asked of the importance of sharing the findings.

“There are also a large number of Canadian clinicians and researchers who attended this meeting, and by presenting the poster at the AES, even though it’s an American meeting, it does help to make the Canadian community aware of the research that’s going on in our country.”

At the meeting, Nurse also learned about the latest epilepsy research from American colleagues.

Some of the professional development sessions she attended focused on new developments in epilepsy medication safety during pregnancy and presentations on insights on the relationship between genetics and epilepsy.

“By attending this meeting, you really get a good sense of the things that are happening, and you get to hear from the leaders in the field who are conducting this research,” says Nurse. “Canadian epilepsy researchers are playing a key role on the international scene.”

If you have feedback on this story, or have a story of your own that you would like to share, please contact the newsroom at 800-294-0051, ext. 23, or e-mail deron(at)axiomnews.ca. You can also leave a comment below.

Writer: Deron Hamel

2012 a successful year for epilepsy advocacy

December 20, 2012

*Happy Holidays from the staff at Epilepsy Ontario!*

The announcement of a proposed provincial epilepsy strategy, funding for epilepsy research and bringing in an epilepsy information specialist are some of the major successes Epilepsy Ontario saw in 2012, says Epilepsy Ontario executive director Rozalyn Werner-Arcé.

Perhaps the biggest news impacting Ontario’s epilepsy community in 2012 was the announcement of a proposed provincial epilepsy strategy to help the one in 100 Ontarians living with the neurological disorder address challenges that come with treating the disorder.

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 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.

“People living with epilepsy responded in droves — resounding demonstration of the need for the strategy,” says Werner-Arcé.

“This is the biggest thing that has ever happened to the epilepsy community in Ontario, and if the provincial government approves, it will give people equitable access to evidenced-based quality care wherever they live in Ontario.

At the beginning of the year, the Ontario Brain Institute (OBI) announced funding for several, multifaceted epilepsy research projects focused on garnering clinical results. New medications, breakthrough diets and brain stimulation are some of the more than 20 areas researchers are studying.

The projects have been underway since spring and are bringing together Ontario’s top researchers, clinicians and patient advocacy groups, which is maximizing resources aimed at helping people with seizure disorders. (Click here to read about some of the findings)

“At the end of our second quarter everybody was on track toward meeting their milestones, and we’re pretty happy about that,” Dr. McIntyre Burnham, director of the University of Toronto Epilepsy Research Program and co-director of the OBI-Epilepsy Research Project, said recently.

In April, Epilepsy Ontario welcomed epilepsy information specialist Suzanne Nurse to the organization. Creating this position marked a milestone for Epilepsy Ontario, says Werner-Arcé, noting that Ontarians living with epilepsy now have access to an expert who can help them better navigate the health-care system and connect them to local support agencies.

“Thanks to technology, (Nurse) is also able to provide support to families, teachers and employers in the far-flung regions of the province,” says Werner-Arcé.

But these weren’t the only successes Epilepsy Ontario saw in 2012. Other important milestones include Epilepsy Ontario providing eight scholarships to deserving high-school students living with epilepsy this summer, re-engaging with epilepsy agencies and the move into a more affordable and centrally located head office.

Werner-Arcé extends her thanks to the people she has worked with this year.

“It has been a pleasure to get to know and work alongside so many dedicated and committed volunteers and staff,” she says. “I’m looking forward to working together in 2013 to improve the quality of life of people who live with epilepsy.”

Please click here if you would like to make a donation to Epilepsy Ontario this holiday season.

Writer: Deron Hamel

Epilepsy Ontario donations are gifts that keep on giving

December 13, 2012

Are you struggling for gift ideas this holiday season? Don’t know what to get for those hard-to-buy-for family members and friends? If so, consider making a donation in a loved one’s name to help provide supports for people living with epilepsy, a neurological disorder affecting one in 100 Canadians.

Why is donating to Epilepsy Ontario worthwhile? For starters, it’s a disorder so prevalent it likely affects someone you know. To put it into perspective, more than 300,000 Canadians are living with epilepsy, more than the number of Canadians living with multiple sclerosis, Parkinson’s disease or autism combined, says Jeanette Schepp, Epilepsy Ontario’s resource development co-ordinator.

Added to this, people living with epilepsy are often faced with stigmas affecting their employment, education and other human rights. Part of your donation to Epilepsy Ontario will go towards educating employers, schools and the public about epilepsy to help raise awareness of what epilepsy is to help break barriers for people living with the disorder.

“Those contributions can make a significant difference in a person’s life,” says Schepp.

Not only does Epilepsy Ontario help raise awareness and educate people about the disorder, the organization also serves as a valuable resource for people living with epilepsy and their families in other ways.

For example, if a person who has a seizure disorder is having challenges with medications, Epilepsy Ontario can connect them with epilepsy experts like Suzanne Nurse who can provide recommendations and guidance to where they can receive more information.

There are many ways people can donate to Epilepsy Ontario. The easiest and most efficient way is to donate through Epilepsy Ontario’s Canada Helps site, but you can also contact the organization directly if you wish to give by cheque or credit card.

If you wish to extend a donation beyond the holiday season, you can visit Epilepsy Ontario’s online donation site to sign up for the monthly giving program, which will automatically deduct donations via credit card.

Additionally, if you sign up for the monthly giving program with a minimum $10 per month donation with your Visa credit card, Visa will make a one-time $10 donation to the charity you choose.

Schepp underscores that you do not need to donate large sums of money to make a difference to people living with epilepsy.

“It can be as simple as exchanging one $5 Starbuck’s coffee per month for a charitable gift,” she says.

To learn more about supporting Epilepsy Ontario, please check out our Twitter and Facebook pages.

Writer: Deron Hamel

Video helping law enforcement assess seizure disorders slated to be ready for Purple Day

December 7, 2012

Police officer Marcel Allen is hoping a video he’s working on for the Canadian Police Knowledge Network (CPKN) will help police officers nationwide better assess situations when approaching people who have gone into seizure.

Since last speaking to the Voices of Epilepsy in March, Allen has been busy working on the video, which contains several scenarios police can face when approaching situations involving people who have gone into seizure. It is slated to be made available on the CPKN, an online education provider for police and law-enforcement personnel, on Purple Day, March 26.

Currently, the video is in the production stage, with Allen focusing on making sure the terminology used is in plain language to maximize people’s understanding of epilepsy and seizures. Allen is also working with other law-enforcement officials to ensure information in the video falls in line with Ontario’s policing standard manual, which must be strictly followed.

When a person goes into seizure, it can be challenging for responding police officers to distinguish between people who have epilepsy or other seizure disorders and a person who is intoxicated or has mental-health issues if they are not educated about seizures, says Allen, who has epilepsy.

The goal of the video is to educate officers on how to assess situations to determine if a person has a seizure disorder and then properly address the situation in a manner that’s safe for both officers and the person they’re approaching. If a person is in seizure or in a postictal state, they need immediate medical attention.

The video will also pose two perspectives to viewers: that of a police officer and that of a person who has had a seizure, notes Allen.

“When police are walking into an environment (where there is potential of threat), police have to assess their environment and the person within that environment to determine all the different factors (that can be present),” says Allen.

Allen knows first-hand what can result from police officers not understanding how to assess a situation when approaching someone with a seizure disorder. On Aug. 8, 2010, Allen was off duty and sitting in his car in traffic with his children in downtown Ottawa when he went into seizure. As he was coming out of seizure, a nearby RCMP officer responded, followed by city police.

While in a postictal state he struggled with officers, a common reaction, but it resulted in Allen being Tasered by an officer.

Allen decided to focus his frustration from the incident in producing a video to better educate law enforcement on assessing situations involving people with seizure disorders.

“Their reaction in trying to help me was probably the worst reaction that they could have had,” Allen said earlier this year.

“When I realized that, I thought, OK, something has to be done.”

Allen also extends gratitude to Epilepsy Ontario, epilepsy experts and the law-enforcement officials who are helping with the video’s creation.

“It (would be) a daunting task for one person,” he says.

Writer: Deron Hamel