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.

Epilepsy Canada has a new phone number.

Our phone number has changed to 647-777-8416 effective June 14, 2012

Epilepsy Canada and Idic15 to work together

Today, Epilepsy Canada announced an agreement with Idic15 Canada, to cooperate on awareness initiatives to promote the connection between epilepsy and the Idic15, otherwise known as Chromosome 15q11-13 Duplication Syndrome. Idic15 Canada is a recently established Canadian Non-Profit Society, which provides collaboration, advocacy and research to families living with the condition.

Gary Collins, Executive Director of Epilepsy Canada says, “Initially our involvement will be to assist in creating awareness for Idic15 Awareness Day and providing online fundraising resources to the Idic15 organization.”

Idic15 is a rare chromosomal disorder involving an extra copy of genetic material from the long arm of chromosome 15 in the region 11.1-13.2. The type and severity of symptoms are determined by the amount and location of the duplicated genetic material. Many, affected children and adults have seizures at some point in their lives. These may be occasional or frequent, short or prolonged. There is increasing evidence that SUDEP is a risk in Idic15, so management of the epilepsy is crucial.

There are currently 40 Idic15 families registered with Idic15 Canada.  Co-founder Theresa McKirdy believes that there are many more that have not been properly diagnosed because of the lack of information that has been available to the medical community. The organization has been formed to advance awareness, resources and clinical research for those living with the condition. Ms McKirdy said, “Partnering with Epilepsy Canada is an important element of our strategy to raise overall awareness about the Idic15 disorder.”

Epilepsy Canada Announces a Call for Research Funding Submissions

Epilepsy Canada today announced that it is again accepting submissions to support research trainees in any area of research pertaining to epilepsy.  Executive Director Gary Collins says, “With this particular call, we are seeking to fund a post-doctoral researcher and a summer studentship associated with a Canadian university or hospital.”  He added research activities must be conducted within Canada to qualify for the funding.

Epilepsy Canada's mission is to support research (in the biomedical, clinical or social sciences) that is focused on improving the lives of people with seizure disorders.  The association is very proud of the high quality of young researchers and the research projects it sponsors.

 A rigorous grant review process headed by Epilepsy Canada President Dr. W. McIntyre Burnham, is carried out by individuals from the medical and scientific communities across Canada. Mr. Collins says the peer review process ensures that Epilepsy Canada is making the best possible use of research dollars and investing in the most promising research.

Research Fellowships are intended to develop expertise in clinical or basic sciences epilepsy research and improve the quality of care for epilepsy patients in Canada. Each year, funds are available to young Canadian researchers with an M.D. or Ph.D. degree.

Summer student bursaries are intended for third and fourth year undergraduates earning a B.Sc., graduate students in psychology, sociology, biochemistry, and medical students. The purpose of this bursary is to encourage individuals to pursue careers in epilepsy, in research or practice-settings.

Interested parties can submit a proposal via email to Mr. Collins at the following address, garycollins@epilepsy.ca. The deadline for 2013 submissions is June 14.  Further details can be obtained by visiting the Epilepsy Canada website www.epilepsy.ca  and following the links to 2013 Call for Submissions.

RESEARCH PARTICIPANTS NEEDED

Are you a person with a disability or the immediate

family member of a person with a disability?

The Government of Canada is conducting a study about government
programs for persons with disabilities and issues related to saving for
the future. If you or your immediate family member with a disability is in receipt of
the federal Disability Tax Credit, you might be eligible for the study.

As a participant in this study, you will be asked to participate in:
1) a 2 hour focus group or
2) a 40 minute telephone interview.

In appreciation for your time, you will receive a $75 cash honorarium.
To volunteer for this study, please contact us at 1-866-770-4649 and
leave a message with your name and telephone number. Someone will
call you back to confirm your eligibility for the research.
This study is being conducted on behalf of the Government of Canada
by Phoenix SPI, an independent Canadian research firm.
Your personal information will be treated in complete confidence.

Sessions will be held during May in a number of Canadian cities:

May 14th - Moncton
Corporate Research Associates
68 Highfield Street
Suite 101
888.414.1336
Fax: 506.859.1691

May 15th - Vancouver
Vancouver Focus (JMI)
1156 Hornby Street
604.682-4292
Fax: 682.8582

May 15th - Montreal
Ad Hoc Research
1250 Guy Street
Suite 900
514.937.4040
Fax: 935.7700
 
May 16th - Whitehorse
Coast High Country Inn
4051- 4th Avenue
867.667.4471
Fax: 667.6457
 
May 16th - Sherbrooke
Delta Hotel & Conference Centre
2685 Rue King Ouest
819.822.1989
Fax: 822.8990

To volunteer for this study, please contact us at 1-866-770-4649 and leave a message with your name and telephone number. Someone will call you back to confirm your eligibility for the research.

This study is being conducted on behalf of the Government of Canada by Phoenix SPI, an independent Canadian research firm.

Your personal information will be treated in complete confidence.

Major Announcement from the Ontario Brain Institute

Epilepsy Canada Turns To Social Media to Drive Fundraising Effort during National Awareness Month

Epilepsy Canada has recruited Pickles, Love Blaster and a growing number of social media supporters to help meet its fundraising goals. March is Epilepsy Awareness month and the agency is asking supporters across the country to create local fundraising events using its secure, web-based fundraising program.
Pickles and Love Blaster are among the first teams to register to raise funds at the charity’s
Quiet No More website.Team Pickles -- named in honour of 20-month old Nicholas Webster of Ottawa who was diagnosed with epilepsy last year-- has set a team goal of $10,000. His mother Wendy told us, “Without medication Nicholas has up to 17-20 seizures a day.”  Though appreciative of the relief that drug therapy provides her son, Ms. Webster is concerned about the long-term effect the medication may have on her child’s future. Research, she believes is the only way to find an alternative to drugs.

Over 300,000 Canadians currently battle the neurological disorder that results in seizures. Another 15,000 are expected to be diagnosed with the condition this year.

Gary Collins, Executive Director of Epilepsy Canada says, “This campaign is our latest effort to bring attention to the need for research funding for epilepsy.” He says patients who receive an epilepsy diagnosis have their lives turned upside down. To manage their condition they must rely on medication, invasive brain surgery or extremely restrictive diet regimens: therapies that are not effective in every case.

Mr. Collins, an epileptic himself says, “Epilepsy can also lead to other issues such as depression and one in 100 people diagnosed with epilepsy die of SUDEP” (sudden unexpected death related to epilepsy).

Epilepsy Canada is the only national not for profit agency that focuses solely on raising money to assist with research into the condition.  It annually funds projects at Canadian universities and medical centres aimed at determining the causes of the condition and better ways to treat it.  The charity receives no direct government funding and relies on corporate and private donations to reach its funding targets.

“The Quiet No More campaign is our most aggressive use of social media to date says Mr. Collins.  “We are appealing to everyone to build their own personal fundraising event using the online tools we have provided through the Quiet No More website and share their commitment with friends on Facebook and Twitter.”

Information about the campaign and how supporters may get involved can be found at www.epilepsy.ca or by sending an email to support@epilepsy.ca

An RDSP can help epilepsy families with long-term financial security

Tax season is upon us: the time of year Canadians traditionally make donations to an RRSP to benefit from immediate tax savings and to shelter money for retirement. If your family is one of the over 300,000 in Canada that live with epilepsy you can also benefit from a Registered Disability Savings Plan (RDSP).

Mark Lundquist, a financial planner with Edward Jones says, “Qualifying individuals can receive up to 300% of their contributions matched in the form of government grants, making an RDSP a very attractive investment option.”

How can people with disabilities benefit from the RDSP?
The structure of an RDSP is similar to the Registered Education Savings Plan (RESP). The RDSP allows money to be invested, exempt from tax until it’s withdrawn. Benefits include:

1) Contributions are matched by federal grants. The federal government will match contributions made to the RDSP with Canada Disability Savings Grants. Grant amount depends on the size of the annual contribution as well as family net income. These grants are available until the year the beneficiary turns 49, to a maximum of $70,000.
2) Low-income families receive an additional bond. Families whose net income is $37,885 or less will receive annual Canada Disability Savings Bonds of up to $1,000 towards the RDSP. Like the grant, these bonds can be received until the year the beneficiary turns 49 years old, up to a lifetime limit of $20,000.
3) Investment income is tax-exempt until withdrawal. Earnings generated by contributions to the savings plan are tax-exempt while they stay in the plan. When earnings are withdrawn, they are taxable in the hands of the beneficiary and likely to be taxed at a lower rate.

Who is eligible?
To qualify for the RDSP, you must be eligible for the Disability Tax Credit and have submitted a Form T2201, Disability Tax Credit Certificate to the Canada Revenue Agency. The two basic conditions are that (1) your disability has lasted (or is likely to last) at least 12 months and (2) your ability to carry out basic activities of daily living are significantly restricted. A brief questionnaire to help see if you qualify and Disability Tax Certificate application forms are available from the Canada Revenue Agency. Visit their website or call 1-800-959-8281.
To learn more about the Registered Disability Savings Plan ask a qualified financial advisor.  Mr. Lundquist can be contacted at mark.lunquist@edwardjones.com .

Sick Kids Hospital Hosts Epilepsy Family Education Day - Coming March 3

The 3rd Epilepsy Family Education Day hosted by SickKids and the Ontario Brain Institute is quickly approaching. It will be held on Sunday March 3, 2013 from 10am to 4pm at the Hollywood Theatre in the Hospital for Sick Children.

Families that have children with epilepsy will want to note this opportunity. The focus of the symposium is to provide information about resources, treatment and current research.

Registration for the event is free online at http://www.sickkids.ca/Learning/learning-opportunities/upcoming-conf/index.html. There you will also find driving directions, parking and other important information.

Epilepsy Canada announces funding partnership to turn old laptops into new research dollars

Toronto: Epilepsy Canada today announced a new partnership with the Green4Good™ program. An innovative initiative of Compugen Finance, Green4Good offers Canadian enterprises an effective way to solve the challenge of disposing of old IT equipment while raising money for charity.

Epilepsy Canada is counting on the program to turn old laptops into a new source of research funds. It will channel all dollars it receives into research for new therapies and treatments of epilepsy. Over 300,000 Canadians live with the neurological disorder that causes sudden bursts of hyperactivity in the brain and reveals itself in the form of seizures. 

Steve Byrne, Director of Green4Good says, "Each year companies around the world divest themselves of massive amounts of IT equipment that no longer serves their purposes. This presents a big environmental challenge. Much of this equipment can end up in land fill sites."

Compugen Finance developed the Green4Good as a comprehensive approach to the disposal of decommissioned corporate IT assets–desktops, notebooks, servers, printers, monitors, network components, etc.–that eliminates any negative environmental effects and allows organizations to leverage any residual value in those assets. Green4Good then turns the net gains from IT asset disposition into support–cash and/or new technology products/services–for their chosen charities.

Gary Collins, Executive Director of Epilepsy Canada, accepted an initial donation of $2,000 from Compugen Finance, but sees this as a "down payment on the potential benefit".  He says that he will encourage Epilepsy Canada's other corporate sponsors to get on board with this program and turn their aging laptops, printers, servers and other IT equipment into dollars for epilepsy research.

Epilepsy Canada is the country's only national organization with a mission to enhance the quality of life for persons living with epilepsy through the funding of research. It receives no government money and relies totally on individual and corporate donations to achieve its goals.
Compugen is dedicated to simplifying the business of technology. Since 1981, it has provided innovative solutions and services to help customers leverage their investments in technology infrastructure.