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.
Friday, 5 July 2013
Friday, 14 June 2013
Epilepsy Canada has a new phone number.
Our phone number has changed to 647-777-8416 effective June 14, 2012
Friday, 24 May 2013
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.”
Monday, 20 May 2013
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.
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.
Wednesday, 24 April 2013
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 governmentprograms 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
Your
personal information will be treated in complete confidence.
Friday, 8 March 2013
Wednesday, 6 March 2013
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
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
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