Purple Hair 4 Epilepsy draws attention to the need for research funding

If later this month you see a middle-aged executive with purple hair on the streets of Toronto, chances are it will be business consultant Gary Collins, who also serves as Executive Director of Epilepsy Canada.

March 26 is International Epilepsy Awareness Day and Gary has committed to dye his hair purple on that day to raise money for epilepsy research.   

Gary Collins, Executive Director Epilepsy Canada

Over 300,000 Canadians, including Mr. Collins, have been diagnosed with epilepsy. Another 15,000 will be diagnosed this year. Children and seniors are the two most frequently diagnosed groups.

Epilepsy affects one of every 100 people worldwide. Gary was diagnosed with epilepsy at age 30.  The diagnosis immediately raised safety concerns and impacted his job and family.  “I worked in sales and immediately my driver’s license was suspended and I was unable to fly to see customers alone.” 

Gary volunteered to help at Epilepsy Canada because he considers himself extremely fortunate.  He says, “Things turned out OK for me. After a short trial, my doctors were able to find medication that controlled the seizures and allowed me to resume my career and a normal life. That’s not the case for many.”

With correct diagnosis and medication up to 70% of epileptics are able to live productive lives, seizure free.  But much more needs to be done to find therapies to help the 30% who have seizures that are resistant to drug therapies.

During March, Epilepsy Awareness month, people are being encouraged to donate to Epilepsy Canada’s research grants program.  Since 1966, Epilepsy Canada has annually funded important epilepsy research projects at major Canadian hospitals and universities.  Money raised by the Purple Hair 4 Epilepsy and other initiatives will contribute to keeping the funding program alive.
Those who wish to sponsor Gary or others who have pledged to colour their hair purple can do so online at Purple Hair 4 Epilepsy.com

Young Movie Actress Supports Epilepsy Canada

Rylie Behr

Rylie Behr is a remarkable young actress with big dreams. Barely into her teens, she has completed several film projects.

Rylie was diagnosed with epilepsy at the age of three.  Since that time, she has learned how to listen to her body and to accomplish her goals while managing her condition. Most importantly, with the help of a supportive family she hasn't allowed her health concerns to define her. View her story...

Avertus Epilepsy Survey Deadline Extended to February 7.

Thank you to all those who have taken the Avertus survey. The response rate has been excellent, but we would like to give everyone a chance to respond. Accordingly, the deadline has been extended until Friday, February 7, 2014. Your responses and insights are critical for the early development of a new medical device that can improve the lives of millions of people affected by epilepsy.
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Avertus Epilepsy Technologies Inc. is a new business formed to develop a new promising technology - a seizure monitoring and detection device for home use.  Avertus in partnership with researchers at the University of Toronto are the development team working on a breakthrough system for the management and treatment of epilepsy.

The company is asking for those with epilepsy OR those who care for a loved one with epilepsy, to complete a short survey that will help us:

1. Determine the interest level of the technology underdevelopment;
2. Identify the critical features of the technology that will help guide its development and;
3. Develop a better understanding of the needs of the epilepsy community.

The survey is voluntary. The insights and opinions will be used to assist the research team in guiding the development of this new technology.  
The survey will take you approximately 15-20 minutes and your responses are completely confidential and anonymous.

SURVEY LINK:   http://fluidsurveys.com/s/epilepsy_survey/

Expert panel on epilepsy treatments open to the public

The latest drug, clinical and surgical developments in the treatment of epilepsy will be discussed at Café Scientifique, sponsored by the Canadian Institute of Health Research, on October 21.

 Dr. Mac Burnham, Professor Emeritus, University of Toronto and past President of the Board of Directors of Epilepsy Canada, Dr. Carter Snead Professor, SickKids and University of Toronto and Dr. Taufik Valiante, Assistant Professor, University Health Network and University of Toronto are among the panelists. The panel discussion will be moderated by Dr. Chau Tran.

 Epilepsy: The challenges and the future of understanding is a free event and open to both members of the medical community and anyone from the general public with an interest in epilepsy. Seating is limited, so interested people are asked to RSVP to Wendy Ricketts at SickKids hospital. The email address is wendy.ricketts@sickkids.ca

 The event will be held at the University of Toronto Faculty Club, Upper Dining Room, 2nd Floor, 41 Willcocks Street, Toronto. It is scheduled to run from 6 pm to 9 pm and refreshments will be available.

Funding from Epilepsy Canada brings a cure for Lafora Disease within reach

Epilepsy Canada has directed its latest funding award toward important research in finding a cure for Lafora disease. Dr. Julie Turnbull, PhD will be completing the work at Toronto’s Sick Kids hospital. The research is part of investigations that have been carried on by a team headed by Dr. B. Minassian since 2011.

In her application for funding, Dr. Turnbull said, “If successful, (this) will be one of the first cures for epilepsy and obviously very important for children and families dealing with this, arguably severest form of (the disorder).” Results from the testing now underway could be known as early as the end of 2013. Dr. Turnbull said that it was important for the Sick Kids team to get the funding at this time. She believes that if this phase of research is successful, a cure for Lafora disease could be within reach for the first time.



Dr, Julie Turnbull

Lafora Disease (LD) a progressive myoclonus epilepsy, is the most severe of the teenage-onset epilepsies. First described in 1911, onset is typically in early adolescence, striking children who were otherwise healthy. Symptoms begin with an initial seizure. Over time seizures become constant and pharmacologically intractable. The disease progresses until patients are bedridden with persistent seizures and severe cognitive impairments. It is generally fatal within 10 years of onset. Though exact numbers are unknown, Lafora Disease could affect up to 175 people in Canada.

Gary Collins, Executive Director of Epilepsy Canada stated, “We are grateful beyond words to the donors that make epilepsy research at Canadian hospitals a reality. We are hopeful that Dr. Turnbull and the team at Sick Kids are indeed close to a historic breakthrough in their efforts to conquer Lafora Disease.”

Mutations in two genes are known to cause the build-up of Lafora Bodies in neurons causing LD. EPM2A encodes laforin, a glycogen phosphatase and EPM2B encodes malin, an E3 ubiquitin ligase. In the past two years the researchers at Sick Kids have proven that removal of Lafora Bodies, abnormally structured glycogen, cures the disease in mice with laforin-deficient Lafora disease.  Dr. Turnbull points out, it remains to be shown whether or not the same applies to malin-deficient Lafora disease. This is the goal of the newly funded research. 

Dr. Turnbull first began working on the problem of a cure for LD in 2002.  The desired result from this phase of research would bring eleven years of work to a successful conclusion and a cure to Lafora patients.

NEW APPROACH FOR THE TREATMENT OF EPILEPSY AUTHORIZED BY HEALTH CANADA

Fycompatm (perampanel) is now available as an adjunctive treatment for adult patients

Eisai Limited has announced the Health Canada authorization and availability of FYCOMPA (perampanel) indicated as an adjunctive therapy in the management of partial-onset seizures, in adult patients with epilepsy who are not satisfactorily controlled with conventional therapy. FYCOMPA is a first-in-class treatment authorized by Health Canada that selectively and non-competitively targets post-synaptic AMPA glutamate receptors, representing a new approach to seizure control.

Health Canada’s authorization of FYCOMPA was primarily based on three Phase III studies (304, 305 and 306). These multi-centre, randomized, double-blind, placebo-controlled, parallel group studies evaluated the efficacy and safety of FYCOMPA compared to placebo given as an adjunctive therapy in patients with partial-onset seizures.The studies demonstrated that FYCOMPA significantly reduced seizure frequency in patients with partial-onset seizures with or without secondarily generalized seizures.

"FYCOMPA represents an innovative approach in the treatment of epilepsy and a much needed option for Canadian patients and physicians," says Dr. Neelan Pillay, Clinical Professor, Director Adult Epilepsy Program, EEG and Evoked Potentials at the Department of Clinical Neurosciences, Foothills Medical Centre."When added to their current treatment regimen, FYCOMPA is shown to significantly reduce patients."

Epilepsy Canada President Dr. “Mac” Burnham said, "We have followed FYCOMPA's success in clinical trials and we welcome its release in Canada.  It is always good to have a drug which works by a new mechanism.  It gives us hope that the drug will be effective against seizures that have resisted the medicines currently available."

About Epilepsy
Epilepsy is a medical condition that produces seizures affecting a variety of mental and physical functions. About 70 per cent of people with epilepsy have partial-onset seizures. In about 30 per cent of patients with epilepsy, seizures cannot be controlled with treatment. In Canada, 300,000 Canadians currently live with epilepsy, and an estimated 15,500 are diagnosed each year. Despite the high epilepsy incidence, there still remains a relatively low understanding and awareness of this neurological disorder.

About FYCOMPA (perampanel)
FYCOMPA is an oral medication taken once-daily and is the first Health Canada-authorized selective and non-competitive post-synaptic AMPA (alpha-amino-3-hydroxy-5-methyl-4-isoxazolepropionic acid) glutamate receptor antagonist. AMPA receptors, widely present in almost all excitatory neurons, transmit signals stimulated by the excitatory neurotransmitter glutamate within the brain. Glutamate is the primaryexcitatory neurotransmitter in the central nervous system. FYCOMPA is supplied as 2 mg, 4 mg, 6 mg, 8 mg, 10 mg and 12 mg film-coated tablets.

Discovered and developed by Eisai, FYCOMPA has been licensed in more than 30 countries including, the U.S., U.K., Germany, Sweden, Norway, Denmark, Austria and Switzerland. For more information on FYCOMPA, please refer to the product monograph for complete prescribing instructions. For more information about Eisai Limited, visit the company’s website www.eisai.ca

Discovered and developed by Eisai, FYCOMPA has been licensed in more than 30 countries including, the U.S., U.K., Germany, Sweden, Norway, Denmark, Austria and Switzerland. For more information on FYCOMPA, please refer to the product monograph for complete prescribing instructions. For more information about Eisai Limited, visit the company’s website www.eisai.ca

Innovative EpLink Research Funded through 2018

A recent funding announcement from the Ontario Government has assured that EpLink - the Epilepsy Research Program co-directed by Epilepsy Canada President Dr. Mac Burnham - will maintain its funding through 2018. EpLink is a major initiative of the Ontario Brain Institute, which received the news of its extended funding in March of this year.

The EpLink Epilepsy Program is unique in Canada, linking more than twenty-five researchers (working at nine different university and hospital sites across Ontario), five industry partners, five non-profit advocacy groups and a national NFP organization dedicated to epilepsy research.The EpLink Program will bring these workers more the $2 million per year in research support. Dr. Burnham shares responsibility for direction of the program with Dr. Jorge Burneo of London, Ontario.  It’s his hope that EpLink’s influence will spread far beyond the province’s borders and will form a template that can be adopted by provincial governments all across Canada.

Dr. Burnham notes that the goals of the EpLink Program are translational in nature. Though its studies involve cutting edge science, its major focus is to improve clinical care for epilepsy in the very near future. To accomplish this goal, EpLink is partnering with industry, since its support is necessary to bring new discoveries from bench to bedside. EpLink is also partnering with non-profit regional and provincial epilepsy associations in Ontario.

The research projects supported by the EpLink Program involve almost every area of epilepsy care. They are divided into six different themes: 1) Epidemiology and Diagnosis, 2) Medical Control of Seizures – Pharmacological, 3) Medical Control of Seizures – Non-Pharmacological, 4) Imaging for Surgery, 5) Surgery and Stimulation and 6) Genetics and Epigenetics. While there is not space to describe all of the projects, reviewing a few of them may give some sense of the depth and breadth of the EpLink Program.

In Epidemiology and Diagnosis, for instance, Dr. Michele Shapiro in Hamilton is testing whether longer initial EEGs will more accurately diagnose epilepsy after the first seizure, whereas Dr. Jorge Burneo in London is trying to assess the number of patients who develop epilepsy after traumatic brain injury and Dr. Elizabeth Donner in Toronto is studying the occurrence of SUDEP and the risk factors associated with it.

The Medical Control of Seizures – Pharmacological relates to drug development and delivery. Dr. McIntyre Burnham in Toronto, for instance, is involved in the pre-clinical testing drugs related to the ketogenic diet, while Dr. Peter Carlen is working on the transmucosal delivery of benzodiazepines to treat cluster seizures.

The theme of Medical Control of Seizures – Non-Pharmacological involves quite a variety of interesting projects. In Hamilton, Dr. Gabriel Ronen is testing whether physical exercise can improve seizure control, while in Ottawa; Dr. Sharon Whiting is investigating the cost-effectiveness of diet therapy – a treatment that should be more widely used. Dr. Elizabeth Kerr in Toronto is testing whether a computer-based training program can improve working memory in children with epilepsy – a study which maybe the first of a number of projects targeting the co-morbidities of epilepsy.

Surgery is the only real cure for epilepsy, and the increasing success of surgery has been largely based on improvements in non-invasive imaging. Imaging for Surgery is one of our most technically advanced themes, with a number of studies focused on MRI and MEG. Dr. Rob Bartha in London, for instance is using 7T MRI to re-screen patients previously screened with 3T MRI. The hope is that the more powerful technique will identify structural abnormalities missed in the earlier screening. Drs. Peters and Khan, also in London, are trying to fuse multi-spectral imaging techniques to create an atlas of epileptogenic brain tissue to assist surgery. Drs. Cheyne and Otsubo in Toronto are working to combine MEG and MRI for more accurate localization of interictal spikes, while Drs. Doesburg and Snead, also at the Hospital for Sick Children, are mapping network connectivity to improve the localization of epileptogenic foci.

The largest project in our Surgery and Stimulation theme relates to the development of computerized systems to detect seizure onset and to suppress seizures with brain stimulation. This effort is being led by Drs. Carlen, Bardakjian and Valiante at the Toronto Western Hospital, with related studies at the Hospital for Sick Children being conducted by Drs. Perez-Velazquez and Otsubo. Additional projects relate to monitoring the effects of surgery on quality of life (Dr. Mary Lou Smith) and predicting the memory deficits that may be caused by seizure surgery (Dr. Mary Pat McAndrews).

Our most "basic science" theme is Genetics and Epigenetics. The payoff from these studies may be some years away, but the impact will be very great. Dr. Danielle Andrade in Toronto, for instance, is studying the genetics of inherited temporal lobe, whereas Dr. Michael Poulter in London is studying methylation patterns in excised epileptic foci. Drs. Cortez and Snead are investigating the exciting possibility that early environment may prevent development of the phenotype in an animal model of West's syndrome.

Readers interested in more information can email Dr. Kathryn Hum, the EpLink Project Manager at eplink.obi@gmail.com or access the EpLink website at www.eplink.ca.