Tag Archives: Epilepsy Ontario

Camp Couchiching offering a 3-day experience for children to ‘fall in love’ with Summerfest

April 28, 2016

Deron Hamel

Camp Couchiching is offering a unique opportunity to children and youths living with epilepsy who want a taste of what Summerfest Camp is like without committing to full two-week programs.

The three-day “mini Summerfest Camp” is being held over the Victoria Day weekend, May 21-23.

The opportunity also helps alleviate anxieties for parents who may have concerns about leaving their children for extended periods of time, says Oona Ashmore, summer camp director at Camp Couchiching, where Summerfest Camp has been held every year since 1994.

Summerfest Camp has nurses and counsellors who have training in working with people with seizure disorders. The major aim of the program is to provide a camping experience for children with epilepsy in an environment where they can be themselves and their parents can take comfort in knowing their children are in safe hands.

Ashmore characterizes the weekend Summerfest Camp as a “smaller version of the summer camp.” She says she has seen many children participate in the three-day camp and enjoy it so much they sign up for a two-week session in summer.

“It’s an opportunity for kids and their families to fall in love with the camp,” Ashmore tells Voices of Epilepsy. “For families who have children with medical uncertainties, it’s a really nice opportunity to see their kids come back with really great, exciting stories about how much they liked camp.

“And the parents hear how the staff is responsible and were paying attention to the kids’ needs, which makes the parents more comfortable.”

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. While at the camp, the children participate in activities such as swimming, hiking, kayaking and sports.

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

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)

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.

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

Clobazam still available but shortage is a concern

February 18, 2014

Click here for an update (May 28th, 2014)

Epilepsy Ontario has learned of a potential clobazam shortage. While there is a supply of clobazam in the market across Ontario and Canada, some pharmacies are reporting shortages of the medication.

Epilepsy information specialist Suzanne Nurse advises people taking clobazam to contact their pharmacies to ensure they can fill their prescriptions ahead of time.

“It’s important to stress that there appears to be a supply in the system at the moment, (but) it’s good to be aware that you shouldn’t wait (until your prescription runs out) to get your prescription filled,” Nurse says.

Epilepsy Ontario reviewed the situation on Feb. 13, discovering that the shortage was more widespread than originally thought. The agency contacted epilepsy agencies and epilepsy specialists to alert them about the situation. The shortage is expected to last until March or April.

Nurse says people taking clobazam shouldn’t panic about the situation. If a pharmacy doesn’t have clobazam, pharmacists are willing to track down supplies from their distribution lines or from other pharmacies for people.

“And there are other supports,” Nurse says. “If people find that they can’t get their prescription refilled they can contact Epilepsy Ontario and we can provide information and if they run into a shortage they should contact their physician immediately.”

The Canadian Epilepsy Alliance has also sent a letter to Canada’s Health Minister Rona Ambrose requesting urgent action to prevent the shortage from escalating.

Six companies market clobazam in Canada. Four of the generic manufacturers are experiencing back-orders. As of Feb. 14, only one of the four manufacturers had posted a notice on the Canadian Drug Shortage Database.

This isn’t the first time there has been concern over clobazam shortages. In January 2013, Epilepsy Ontario sent out an alert about a clobazam shortage. The clobazam supply began to recover the following month.

If your pharmacist is unable to fill your prescription, Epilepsy Ontario recommends you contact your health-care provider immediately. Do not make any changes to your treatment — for example, skipping doses, reducing the dose, or discontinuing the drug — without consulting your doctor.

For more information, please contact Epilepsy Ontario at 905-474-9696, or toll-free 1-800-463-1119, send an email to info(at)epilepsyontario.org or see our drug shortages information sheet.

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.

Update on the clobazam supply

Clobazam is currently available in Canada, but shortages of some clobazam products continue.

During March and most of April there were significant shortages of clobazam, and manufacturers were out-of-stock. The Canadian Epilepsy Alliance (CEA) was first alerted to shortages of clobazam in January 2014 by people who couldn’t get their prescriptions refilled. In early February the CEA and Epilepsy Ontario became aware that multiple generic manufacturers were unable to supply clobazam, although the reason for these shortages has not been disclosed. The supply of brand name clobazam (Frisium) became depleted, due to increased demand, as the generic clobazam stocks dwindled. Two of the generic clobazam manufacturers have medication available again, beginning with APO-clobazam (Apotex) in late April and PMS-clobazam (Pharmascience) during the week of May 28th.

Status of clobazam drugs – May 28, 2014
APO-clobazam (Apotex)	Status: Available
Clobazam-10 (Pro-Doc Limitée)	Status: On Backorder (no resupply date available)
DOM-clobazam (Dominion Pharmacal)	Status: Discontinued
Frisium (Lundbeck)	Status: On Backorder (estimated resupply date is June 30, 2014)
PMS-clobazam (Pharmascience)	Status: Available
Teva-clobazam (Teva)	Status: On Backorder (estimated resupply date is June 4, 2014)

If you experience any difficulties due to the clobazam shortage, or a shortage of another epilepsy medication, please contact Epilepsy Ontario for assistance. We would also be interested in hearing your story if you have encountered a shortage of your medication.

Epilepsy Ontario and the Canadian Epilepsy Alliance Drug Shortages Committee have been actively involved in bringing attention to this particular shortage, and epilepsy drug shortages in general, by communicating with the Federal Minister of Health, Health Canada, provincial Ministries of Health, physicians, pharmacists, drug manufacturers, and other stakeholders. People with epilepsy rely on consistent access to their anti-seizure medication. Drug shortages put people with epilepsy at risk, and the consequences can be serious.

Public Consultation on Drug Shortages: If you are concerned about drug shortages you can share your opinion and your comments. A public consultation on drug shortages is being held by Health Canada from May 22 to July 5, 2014. Click here for more information.