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Agencies buzzing with activity to honour Purple Day

March 25, 2014

Epilepsy support agencies across Ontario are gearing up for Purple Day, the annual international event aimed at raising epilepsy awareness.

Recognized every March 26, Purple Day was launched in 2008 by Cassidy Megan, a nine-year-old Nova Scotia girl who is living with epilepsy.

Since then, individuals and organizations worldwide have hosted events and campaigns to raise awareness of the neurological condition that affects more than 65 million people across the globe, including an estimated 300,000 Canadians.

The weeks leading up to Purple Day have been busy at Epilepsy Halton Peel Hamilton. On March 14, the agency was the featured charity at tenor Colm Wilkinson’s performance at Mississauga Living Arts Centre. Wilkinson addressed the audience of about 700 people to talk about March being epilepsy awareness month and informed the crowd of the programs the agency offers.

On March 28 the agency is hosting its annual Purple Gala. The fundraising event will be held at Credit Valley Golf and Country Club in Mississauga.

Among the many other initiatives Epilepsy Halton Peel Hamilton is working on in honour of Purple Day is a campaign to raise awareness of seizure disorders at schools. The agency has developed kits that include tattoos, pencils, bracelets and information packages to educate young people about epilepsy.

“The end goal is to connect with communities, raise awareness and build on upon that,” says Cynthia Milburn, the agency’s executive director.

Epilepsy and Seizure Disorder Resource Centre of South Eastern Ontario hosted its second annual Purple Pancake Breakfast in Kingston and Gananoque on March 22. All money raised from selling blueberry pancakes is going toward helping the agency fund its community education programs.

Like Epilepsy Halton Peel Hamilton, the resource centre is reaching out to school children. The organization will be attending school assemblies on Purple Day to provide information to students and teachers.

“I think the younger we can get people talking about epilepsy the better,” says executive director Susan Harrison. “Kids are very open to learning more and understanding. I don’t think I’ve been to a school yet where there wasn’t a student who had epilepsy, so they’re seeing it, but they’re not understanding it.”

Nikki Porter, the communications liaison at Epilepsy Support Centre’s Windsor/Essex branch, notes how 10 Tim Hortons stores in Windsor are going to be selling doughnuts with purple sprinkles on March 26. The doughnut shops have also hung Purple Day posters at their locations. The 10 stores are owned by one company which was approached with the idea by a Windsor/Essex branch member last year.

The agency, which covers a large catchment area across southwestern Ontario, is getting support from many others across the region. In Chatham-Kent, the Purple Pansy flower boutique is selling bunches of purple tulips and donating proceeds to the Epilepsy Support Centre.

In Elgin, the statue of Jumbo the elephant will be adorned with a 60-foot purple scarf on March 26.

Additionally, official Purple Day proclamations have been made by city councils in Windsor and Amherstburg.

Porter explains the difference she would like to see made from these campaigns.

“I would like to see (this awareness lead to) more acceptance of people with epilepsy in our communities,” she says.

Click here to learn more about Purple Day.

Writer: Deron Hamel

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.

Mother calls for more action to develop mandatory drug-shortage database

March 21, 2014

When Diana went to fill her daughter’s clobazam prescription last week, she was in for a big surprise when the pharmacy told her it couldn’t supply her with all the medication her daughter needed.

Diana was unaware there was a medication shortage.

With the help of Epilepsy Ontario, Diana was able to get an additional supply of clobazam for her daughter, but it still isn’t enough of the medication to last until the shortage is slated to end in early May.

Since then, Diana has been spending much of her free time phoning pharmacies asking if they have clobazam in stock. This causes another hurdle for Diana because if she has to switch pharmacies, she needs to go back to her daughter’s neurologist and get a new prescription. Once a patient is prescribed clobazam, it can only be switched once to another pharmacy.

Through her efforts, Diana was able to obtain another clobazam supply that her daughter can use until the start of April, but that still isn’t enough medication to last her daughter until the shortage ends.

“It’s very frustrating — I’m very anxious about this,” Diana says, adding she also finds herself checking the online Canadian Drug Shortage Database to see if updates on the shortage are posted.

Diana says the high level of stress she and other people go through during medication shortages could be averted if pharmaceutical companies were mandated by federal law to provide notices of impending drug shortages so people could get their medications ahead of time, or, if needed, ease off one medication and start on a new one.

Diana has a clear picture of what this should look like.

“If there were drug-shortage notices that went out to all pharmacies, patients who have, for example, a prescription for clobazam, could get a phone call or an e-mail notifying them that there is the possibility of a shortage coming up, and an outline would be given for what steps need to be taken,” she says.

Given that pharmacies already have systems in place to notify people when prescriptions are due to be refilled, Diana says she doesn’t see why existing systems can’t be updated to include shortage notices.

Diana is also taking the initiative to write her MP’s office to explain the need for a mandatory drug-shortage database — and she’s encouraging others to follow suit.

Clobazam, which is marketed by several pharmaceutical companies in Canada, is a common medication prescribed to people with seizure disorders. The medication is usually prescribed to work in tandem with other pharmaceuticals. While several companies manufacture the drug, some people with epilepsy can experience changes in their seizure control when they switch brands.

There have been multiple shortages of anti-seizure medications over the past few years, and this is at least the second clobazam shortage in 14 months. In January 2013 Epilepsy Ontario issued a notice that pharmacies had back orders of clobazam.

In September, new guidelines were established that have been developed by government, industry and other stakeholders clearly outlining the expectations, roles and responsibilities for all stakeholders during a medication shortage.

Adhering to these guidelines is important to ensure safety for people with chronic conditions requiring medications, says epilepsy information specialist Suzanne Nurse.

“When it comes to managing drug shortages, early notification from drug manufacturers is key,” she says.

Writer: Deron Hamel

Want more epilepsy information? Then this is the webinar for you

March 13, 2014

Suzanne Nurse says she hopes a March 20 Epilepsy Ontario webinar will provide people with a better understanding of what epilepsy is.

Nurse, an epilepsy information specialist who will be moderating the webinar, adds that once people have the information they need they are encouraged to share what they’ve learned at the webinar to build awareness of epilepsy and seizure disorders.

Having the right information, Nurse notes, often heightens the confidence of those living with epilepsy, making them more comfortable about talking about their condition.

“When I meet people who haven’t received a lot of information about epilepsy they feel quite insecure and uncomfortable talking about epilepsy, but when they have a greater knowledge and understanding of what epilepsy is I think it makes it much easier for them to then convey that information to others,” Nurse says.

“(Having information) increases people’s confidence to be able to talk about epilepsy and to have a greater understanding of what’s causing their seizures.”

Some of the discussion topics will include:

–   What is the difference between a seizure and epilepsy? What causes epilepsy?
–   What are some common types of seizures? How are they different?
–   Answers to frequently asked questions about epilepsy and seizures.

The webinar, entitled An Introduction to Epilepsy, is aimed at anyone interested in learning more about the condition, and will be especially useful to people living with seizure disorders and their families. The information will also be helpful to people experiencing new onset seizures or who are in the process of diagnostic testing.

People who do not have epilepsy and do not have a family member with the condition are also encouraged to join the discussion.

“It’s really for anybody — whatever level of knowledge they have,” Nurse says. “We’re hoping that when the session is over that everybody will have learned something.”

There will be an opportunity for people to submit questions when they register, and there will also be time designated during the webinar for those tuning in to ask questions.

The webinar is the latest in a series of online sessions Epilepsy Ontario is hosting throughout the year. A Jan. 23 webinar on the Special Education Advisory Council (SEAC) was the first session. Because of the success of that event, Epilepsy Ontario decided to host more webinars in 2014 to promote epilepsy education.

Nurse says a major benefit of these webinars is that anyone with an Internet connection or telephone living in any region of Ontario can access important information.

The webinar is Thursday, March 20 from 7 p.m. to 8 p.m., and is accessible by Internet and telephone. E-mail rozalyn(at)epilepsyontario.org to book your free registration. The webinar’s call-in number is 416-764-8662/1-888-884-4534. Participant code: 7605062#

Writer: Deron Hamel

OBCL Epilepsy Scholarship Awards are back — and you can apply now

March 6, 2014

Are you a student living with epilepsy entering your first year of university in September? If so, you have an opportunity to apply for an OBCL Epilepsy Scholarship Award — and OBCL president Lawton Osler is hoping to see lots of applicants.

*OBCL president Lawton Osler (far right) is seen here in 2012 after awarding OBCL scholarships to students (from left to right) Rahman Mohamed, Jaimie Morgan-Lynette and Brooke Corner.*

“I’m looking for as many people as possible to apply,” Osler tells Voices of Epilepsy.

Osler is understandably proud, as his company sponsors the scholarships. Many students living with epilepsy face significant challenges stemming from their condition, coupled with the financial challenges many students face when having to pay for their education.

Receiving one of the six $1,000 scholarships can alleviate some of the financial burden that comes with pursuing post-secondary education, and is a step towards helping young people maximize their potential, Osler notes.

This, he says, is the No. 1 importance of the scholarships.

The scholarships have been sponsored by OBCL since 2006. Their history goes back to the early 2000s when two pharmaceutical companies — first Pfizer, then Lundbeck Canada — offered the scholarships.

Osler, a past Epilepsy Ontario president, was involved with the committee that judged the essays during this time. When Lundbeck stopped sponsoring the scholarship eight years ago, Osler saw a chance to help young Ontarians living with epilepsy finance their post-secondary education.

“I saw this as an awesome opportunity for me to give back,” he says.

The scholarships are being awarded to students who are graduating high school and entering their first year of post-secondary education. The scholarships will be presented at a ceremony June 6. The deadline for application is May 1.

Last year’s scholarship recipients were Chloe Gallagher (Burlington), Tori Gleason (Smiths Falls), Alexander Johnson (Mississauga), Kirsten Leusink (Cambridge), Katelyn Lewis (Thunder Bay) and Suzanne McGuire (Niagara Falls).

Another past OBCL scholarship recipient is Melanie Jeffrey, an Epilepsy Ontario board member and an outspoken advocate for epilepsy awareness.

Every year, up to six Ontario students win a $1,000 scholarship for post-secondary education. As part of their application package, students must submit a personal essay under that year’s theme.

Students wishing to apply for a 2014 OBCL epilepsy scholarship must do so before May 1 by 5 p.m. You can print a copy of the scholarship application by clicking here.

Writer: Deron Hamel