July 13, 2013 – Canada Takes Centre Stage in Global Fight Against Epilepsy: First Time International Meeting of Epilepsy Experts Held in North America
The big themes were: technical advances in diagnosis, medicine and surgery; new ways to organize the healthcare system; psychological and social issues; and the fight against stigma.
Click here to view the full report.
March 26, 2013 – First Official Purple Day in Canada Brings Epilepsy Awareness to Parliament Hill
Parliamentarians encouraged to promote epilepsy education
Ottawa – Today, on March 26, 2013, Purple Day for Epilepsy is being observed for the first time in Ottawa and across the country as the official day for epilepsy awareness, since the Purple Day Act passed with unanimous support in June 2012.
On Parliament Hill, members of the Canadian Epilepsy Alliance (CEA) have gathered with the founder of Purple Day, 14-year-old Cassidy Megan, and her M.P. and author of the Purple Day Act, the Hon. Geoff Regan, to spread epilepsy awareness among Parliamentarians and encourage them to promote education about the disorder within their constituencies.
“When I first found out I had epilepsy, I was scared and thought I was the only one with epilepsy. I didn’t want anyone to know about my seizures because I felt embarrassed and alone,” said Cassidy Megan. “I wanted people to know there are different types of seizures and that they shouldn’t be afraid. I am so thankful to Mr. Regan who has helped me and others because now we have a special day to celebrate epilepsy awareness in Canada. The more people learn about epilepsy, and with the right support and care, people like me can enjoy life, just like everyone else.”
All-party support for epilepsy legislation
In Canada, Purple Day was first recognized as the official day for epilepsy awareness on June 28, 2012, in an Act of Parliament put forward by the Hon. Geoff Regan, M.P. for Halifax West. Bill C-278 met with resounding all-party support and became the only legislation of its kind in Canada. The Act demonstrates meaningful support to the 300,000 Canadians living with epilepsy and helps to reduce the stigma and discrimination that is often associated with the disorder.
“I am proud to be part of this initiative, which is helping to empower people with epilepsy to speak out about their disorder,” said Hon. Geoff Regan, author of the Purple Day Act. “I am grateful to Cassidy Megan and the Canadian Epilepsy Alliance for their tireless efforts to improve the quality of life for people with epilepsy.”
Purple Day increases awareness, reduces stigma and empowers individuals living with epilepsy to take action in their communities. Canadians are encouraged to learn more about epilepsy throughout the month of March, culminating with Purple Day on March 26. There are hundreds of ambassadors in 70 countries worldwide that will be participating in the 2013 Purple Day activities, by wearing purple or getting involved in Purple Day awareness or fundraising events.
Common disorder not well understood
Epilepsy affects over 300,000 Canadians and over 50 million people worldwide. Epilepsy is characterized as a group of disorders of the central nervous system, specifically the brain, and is characterized by recurrent unprovoked seizures. Despite its prevalence, epilepsy is not well-understood. According to The Impact of Epilepsy on Canadians survey conducted in late 2011, many Canadians living with epilepsy experience social isolation, work barriers and relationship issues.
“Epilepsy is one of the most common neurological disorders in the world, but too many people still don’t know the facts,” said Gail Dempsey, president of the Canadian Epilepsy Alliance. “By bringing epilepsy awareness to our government representatives on this historic day, we hope to deepen all Canadians’ understanding of the disorder, dispel the myths surrounding it, and improve the lives of those living with epilepsy.”
About Purple Day
Purple Day for Epilepsy is held each year on March 26 and is dedicated to raising awareness about epilepsy. It helps reduce stigma and empowers individuals living with epilepsy to take action in their communities. Purple Day was founded in 2008 by nine-year-old Cassidy Megan of Nova Scotia, and named after theinternationally recognized colour for epilepsy, lavender. Purple Day was launched internationally in 2009. The Epilepsy Association of Nova Scotia and the Anita Kaufmann Foundation in the United States are the global partners for the Purple Day campaign. UCB Canada Inc. is the exclusive Canadian biopharmaceutical partner for the 2013 Purple Day campaign. For more information, please visit www.purpleday.org.
About the Canadian Epilepsy Alliance
The Canadian Epilepsy Alliance (CEA) is a Canada-wide network of grassroots organizations dedicated to the promotion of independence and quality of life for people with epilepsy and their families, through support services, information, advocacy, and public awareness. For more information, please visit epilepsymatters.com
For more information:
Cohn & Wolfe
Cohn & Wolfe
416 400-6352 – numéro de cellulaire
Canadian Epilepsy Alliance Letter to the Minister of Health regarding the Clobazam shortage – January 8, 2013. Click here to read.
Purple Day Now Legally Recognized in Canada
Act Promoting Epilepsy Awareness Receives Royal Assent
Halifax, NS (June 28, 2012) – An Act representing a day to increase public awareness about epilepsy, Bill C-278, has received Royal Assent and is now a legally recognized day for epilepsy awareness in Canada. The Bill establishes March 26 as Purple Day, a day each year when Canadians wear purple to promote a greater awareness of epilepsy and support the 300,000 Canadians living with the disorder. Inspired by Cassidy Megan, Purple Day dispels the myths about epilepsy and helps people living with the disorder understand that they are not alone.
Hon. Geoff Regan, M.P. for Halifax West, wrote the Private Member’s, Bill C-278 (The Purple Day Act), in late 2008. Since then, Bill C-278 has progressed through the necessary steps in the House of Commons and Senate, to become law. “The swift passing of this Bill is a meaningful show of support for the 300,000 Canadians living with epilepsy and their families,” said Regan.
“I am so grateful that Mr. Regan and Parliament believed in me and Purple Day, and showed the 300,000 Canadians living with epilepsy that they care and that we are not alone,” said Cassidy Megan, Purple Day founder. “I also want to thank the Epilepsy Association of Nova Scotia and the other member agencies of the Canadian Epilepsy Alliance for helping me make my dream come true.”
According to a survey titled The Impact of Epilepsy on Canadians, conducted in late 2011 by Leger Marketing, many Canadians living with epilepsy experience social isolation, work barriers and relationship issues. Over half of the survey respondents (56 per cent) say that restricted independence due to epilepsy is their number one challenge. Stigma, discrimination and a lack of awareness about epilepsy is cited by 38 per cent as the number two challenge, along with the impact of the disorder on their social life. The third biggest challenge facing Canadians with epilepsy is maintaining employment, with half saying their job choices are restricted, and just under 40 per cent unable to get a job if they disclose their condition.
“On behalf of the Canadian Epilepsy Alliance, I would like to thank Mr. Regan for writing the Private Member’s Bill and Parliament for passing this legislation,” said Deirdre Floyd, Chair of the Purple Day Campaign and Vice-President of the Canadian Epilepsy Alliance. “To my knowledge, this is the only legislation of its kind in Canada. I strongly believe that Purple Day will help to further our national mandate to support public awareness for epilepsy and research for those living with this serious neurological condition.”
For additional information:
An Update on Drug Shortages
A CTV follow up of their earlier reporting on the drug shortage situation. More than 250 drugs remain in short supply.
Serious Challenges Faced By Canadians With Epilepsy Revealed
During the fall of 2011, many of our members participated in a survey entitled The Impact of Epilepsy on Canadians. Conducted by Leger Marketing and completed by 671 respondents across Canada in both official languages, the survey is the first of its kind in Canada to explore the impact on life and health among adults living with the disorder.
The findings reveal that Canadian adults living with epilepsy are still struggling to control the common seizure disorder, and face serious health obstacles, including access to specialized care and treatment options, as well as numerous social impacts. Canadians living with epilepsy list the following top challenges that need to be addressed:
- Stigma and discrimination
- Lack of independence
- Social and work barriers
The Canadian Epilepsy Alliance urges all Canadians to take a stand in support of those living with epilepsy by:
- Eliminating the stigma facing those living with epilepsy by supporting greater public education and awareness about the disorder
- Ensuring access to all safe and effective options for optimal seizure control – right across Canada
- Expecting and demanding the best possible specialized care, treatment and social supports for Canadians living with epilepsy
To learn more about the survey, and the results, click the links below.
Canadian Epilepsy Alliance submission to the Standing Committee on Health (HESA) – April 2, 2012. Click here to read.
Shortages of Some Anti-Epileptic Medications
CTV is reporting troubling shortages of some epilepsy medications. Click here to read the article on the CTV website.
March 26th is Purple Day for Epilepsy
A positively purple celebration of global proportions. Click here to learn all about Purple day.
The Management of Epilepsy
Missed the recent webcast? We have the full recording right here. Click here to watch.
A New Hope For Control
Health Canada recently approved Vimpat™ (lacosamide), a new antiepileptic drug. It is indicated for use as adjunctive therapy in the management of partial onset seizures in adult patients 18 years of age and older who are not satisfactorily controlled with conventional therapy. “Vimpat™ is an innovation in epilepsy therapy and has been shown to work effectively in conjunction with a broad range of existing treatments,” says Dr. Fred Andermann, Professor in Neurology and Pediatrics, McGill University, and Epileptologist, Montreal Neurological Institute and Hospital. “Vimpat™ is an important consideration for use by physicians and their adult patients with partial onset seizures who are still uncontrolled despite their current treatment.”
Controlling Partial Onset Seizures
Partial onset seizures are one of the most common types of seizures experienced by patients with epilepsy. Up to one-third of Canadian patients do not have seizure control.
“After almost a decade, we are thrilled that there is a new treatment for people with epilepsy in Canada,” says Gail Dempsey, President, Canadian Epilepsy Alliance. “Lack of seizure control severely impacts independence, productivity, and overall quality of life for Canadians living with epilepsy. These individuals and their families deserve better, and we’re so pleased that patients now have a new option in Vimpat™.”
Epilepsy and Quality of Life
Lack of seizure control severely impacts independence, productivity and overall quality of life for Canadians living with epilepsy. The disorder can cause significant challenges, including difficulty finding employment, loss of driving privileges in some Canadian provinces, cognitive decline and memory impairment, and higher mortality rates. People living with epilepsy also live with a significant social stigma associated with seizures.
New Way of Targeting Pathways
Preclinical studies indicate that Vimpat™ has a novel mode of action. While the precise way in which Vimpat™ exerts its antiepileptic effect in humans is unknown, in preclinical studies Vimpat™ has been shown to modulate sodium channel activity differently compared with other sodium channel blocking AEDs.
Sodium channels play a crucial role in regulating the activity of the nervous system to help nerve cells communicate. Sometimes sodium channels become abnormally overactive which may produce a seizure. Vimpat™ is thought to reduce this sodium channel over-activity, which may contribute to the control of seizures.
Improved Seizure Control
The approval of Vimpat™ was based on efficacy and safety data from three multicentre, randomized, placebo-controlled clinical trials with approximately 1,300 people with epilepsy aged 16 and older who had uncontrolled partial-onset seizures. Before adding Vimpat™, patients experienced a median baseline seizure frequency ranging from 10 to 17 seizures per month, despite being on one to three other AEDs. In the trials, patients randomized to Vimpat™ experienced reductions in median seizure frequency and had their seizures reduced by half at rates that were significantly greater than those in placebo groups. The most common adverse events (>10 per cent and greater than placebo) reported in these trials included dizziness, headache, nausea and diplopia.
Vimpat™ demonstrated efficacy and was generally well-tolerated when combined with a broad range of existing AEDs. (UCB Canada press release, November 11th, 2010)
About UCB Pharma Canada
UCB Pharma Canada was officially incorporated in 2006 with the objective of bringing new-generation, convenient therapies to the Canadian market for neurological disorders. As a patient-focused organization, UCB Pharma Canada’s is dedicated to bringing new and innovative programs to patients, and to the specialists who treat them, to help improve the lives of people living with severe diseases.
To learn if Vimpat™ might be right for you, talk with your doctor or Neurologist.