Author Archives: DHamel

Registration open for Summerfest Camp 2016

April 7, 2016

By Deron Hamel

Children living with epilepsy are once again invited to enjoy a true summertime outdoor experience this year at Summerfest Camp.

Summerfest Camp, which is held annually at Camp Couchiching, near Orillia, is a unique program geared to the needs of children living with seizure disorders.

Going into its 22nd year, Summerfest Camp has an average of 20 to 40 children and youths who have epilepsy attend the program. While at the camp, the children participate in activities such as swimming, hiking, kayaking and sports.

Summerfest Camp enables children aged six to 15 who are living with seizure disorders to attend camp with other children. The camp provides a setting where children can relax and have a good time.

“Summerfest Camp also gives children and youths living with epilepsy important life skills,” says Epilepsy Ontario executive director Paul Raymond. “They’re away from home for up to two weeks, so it helps them mature and it helps them gain independence and increase their self-esteem, and it helps them to realize their own capabilities and their own strengths.”

This year, the Summerfest Camp program will be offered in five sessions throughout summer:

Session 1: July 3-15
Session 2: July 17-29
Session 3: July 31-Aug. 12
Session 4: Aug. 14-26
Session 5: Aug. 28-Sept. 2 (one-week session)

Summerfest Camp, which was founded in 1994 by Anita Allen, a neurology clinic nurse at Toronto’s Hospital for Sick Children (SickKids), also provides respite to parents, giving them a chance to spend time with each other or with their other children.

Since the camp has experienced counsellors and offers on-site nursing professionals who are well-versed in working with people who have seizure disorders, parents enjoy peace of mind knowing their children are safe and in good hands.

To ensure as many children as possible can attend Summerfest Camp, Epilepsy Ontario provides a limited number of sponsorships for families who require financial assistance. The sponsorship request form can be found on the Epilepsy Ontario website.

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.

‘New and improved’ scholarship for students with epilepsy available this year

March 31, 2016

By Deron Hamel

A long-standing scholarship for students living with epilepsy is once again being offered this year in a “new and improved” format.

The Osler Epilepsy Scholarship, formerly called the OBCL Epilepsy Scholarship, is being offered to four students this year. Aside from the name change, the scholarship committee also decided to up the award amount from $1,000 to $1,500.

Additionally, for the first time in the scholarship’s 10-year history, all Ontario students living with epilepsy can apply. In previous years the scholarship was limited to those going into their first year at an Ontario university or college.

“(The scholarship committee) thought, ‘let’s look at giving the scholarship to four people at $1,500 because this might be more attractive to people,’” says Lawton Osler, a Toronto businessman whose company, Osler Business Consulting Ltd., sponsors the scholarship.

Osler says he hopes to see each scholarship recipient use the money to help pay for their education and achieve their academic goals. One of the things that makes Osler proud to be involved with the scholarship is when he attends the award ceremony every June and sees the recipients there with their friends and families to celebrate their achievement.

“That’s a big deal (to me),” he says.

To be eligible for an Osler Epilepsy Scholarship, students must be Canadian citizens or permanent residents who have been accepted into a post-secondary educational program or who are returning students. They must also be under an Ontario physician’s care for epilepsy.

Osler Epilepsy Scholarships are awarded each year to exceptional students who have confronted and overcome remarkable barriers in their academic and personal lives due to their epilepsy.

Applicants must also submit a 600- to 900-word essay, about a famous person who has epilepsy and what that person’s life means to them.

The history of the Osler Epilepsy Scholarship 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 10 years ago, Osler saw a chance to help young Ontarians living with epilepsy finance their post-secondary education.

The deadline scholarship for applications is May 1 at 4 p.m. The four scholarships will be awarded in June at a special ceremony in Toronto.

Click here for more information on the Osler Epilepsy Scholarship.

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.com. You can also leave a comment below.

Celebrating Purple Day at Queen’s Park

March 23, 2016

By Deron Hamel

Epilepsy Ontario will be acknowledging Purple Day by distributing purple ribbons to MPPs on March 24 and attending a session at Queen’s Park, where representatives from the Liberal, NDP and Progressive Conservative parties will read member statements focused on epilepsy awareness.

2014 Purple Day Website poster Purple Day is honoured annually by Epilepsy Ontario and the community-based epilepsy support agencies across the province. Many local Purple Day events are taking place throughout the province to create awareness, decrease stigma and support people living with epilepsy.

Recognized every March 26, Purple Day was launched in 2008 by Cassidy Megan, a then-nine-year-old Nova Scotia girl who was diagnosed with epilepsy when she was seven. Cassidy had one goal for Purple Day: for people to come together globally to learn about epilepsy to reduce its stigma.

It is estimated that one in every 100 Ontarians is living with epilepsy. Given epilepsy’s prevalence, it is important for Ontarians to understand what epilepsy is and how to support those living with the condition, says Epilepsy Ontario executive director Paul Raymond.

“Purple Day is an excellent opportunity for people to not only show their support for friends or loved ones who are living with epilepsy by wearing purple, but also to take time to learn about epilepsy, how it impacts people, and what some of the common myths and misconceptions people have about the condition are,” Raymond says.

Purple Day received Royal Assent on June 28, 2012. Since it began eight years ago, an increasing number of people, businesses and organizations have been using March 26 as a day to promote epilepsy awareness by sharing information, raising awareness and, of course, wearing purple.

“Purple Day is an international grassroots effort dedicated to increasing awareness about epilepsy worldwide,” the Purple Day website states.

“On March 26, annually, people in countries around the world are invited to wear purple and host events in support of epilepsy awareness. Last year, people in dozens of countries on all continents, including Antarctica, participated in Purple Day.”

Click here to learn more about Purple Day.

Divalproex sodium shortage expected to end soon, but that doesn’t curb family’s anxiety

March 17, 2016

By Deron Hamel

Although a multifaceted effort is underway to end a severe shortage of divalproex sodium (Epival), a commonly used anti-seizure drug, the anxiety created by the limited amount of the lifesaving medication lingers, says Lynda Bowyer.

Bowyer, whose 21-year-old daughter takes Epival to control her seizures, says this is the first time her family has experienced the stress that comes with a medication shortage, but notes it has been a learning experience.

“You have to be informed; you have to constantly monitor what’s going on with the (drug manufacturers) and the market influences, and you have to be aware of how (these things) impact the supply of what are lifesaving drugs, especially if one of your family members needs them,” Bowyer tells Voices of Epilepsy from her home in Sault Ste. Marie.

Contributing to the stress that families feel when vital medications are in short supply is the lack of information about why shortages happen, Bowyer says.

Following public consultation in 2014, the Canadian government announced it would be mandating the country’s pharmaceutical manufacturers to publicly announce medication shortages. Mandatory reporting is not in place yet.

“They (the pharmaceutical companies) haven’t been very clear on what is going on with the (Epival) shortage,” Bowyer says.

This, Bowyer adds, leaves families like hers feeling a great deal of anxiety and fear about not knowing when a lifesaving medication will be back on the market.

“Absence of a drug (like Epival) will endanger lives; there is no question in my mind that this is where we are at right now,” she says.

Bowyer’s daughter has not had a seizure in the more than five years since she began taking Epival, a gold-standard anti-seizure medication used to control a variety of seizure disorders.

Like with many other anti-seizure medications, a person cannot immediately stop taking divalproex sodium (Epival). Coming off the medication quickly can cause people to have seizures, Bowyer says.

“You cannot go two or three days without taking Epival without endangering your life, and that’s the bottom line.”

Bowyer’s daughter has a supply of Epival which should take her through the next six weeks when the shortage of generic divalproex sodium is expected to end. If the shortage has not ended by then, Bowyer says she plans to cross the border into Sault Ste. Marie, Michigan, to get a supply of the drug, which will cost more than five times the Canadian price.

“If my daughter does not get (Epival), she will lose her driver’s licence, she will not be able to attend school – these are the consequences,” Bowyer says.

Suzanne Nurse, director of information and client services with Epilepsy Ontario, agrees that this is a “very serious” situation.

“The good news is that there is recognition of the problem and there is a huge, multifaceted effort underway to end this drug shortage,” she says.

“There is new stock of divalproex sodium coming into the system, and there is more coming behind it. We need everyone’s co-operation over the coming weeks so that this essential medication can get to as many people who need it as possible. In cases when the medication is not available, people need to speak with their doctor about a suitable alternative.”

In a written statement, officials from Health Canada’s health products and food branch say they are working to end the shortage of divalproex sodium.

“We are working in partnership with all relevant stakeholders – including drug manufacturers, wholesalers, retailers, provincial and territorial governments, and stakeholder organizations like the Canadian Epilepsy Alliance – to co-ordinate an effective solution,” the statement says.

Follow alerts on the Epilepsy Ontario website for updates on this drug shortage: https://epilepsyontario.org/alert/alert-divalproex-sodium/

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.com. You can also leave a comment below.