Newsletters

Animal models of epilepsy are often used to test the effects of new drug treatments on seizure occurrence. In this study, a research team led by EpLink co-director Dr. McIntyre Burnham examined the effects of cannabis extracts on seizure frequency in a model of focal impaired awareness seizures (FIASs). FIASs, previously known as complex partial…

Children with epilepsy (CWE) often have co-existing conditions such as attentional, behavioural or learning difficulties that can impact school performance. This can be even more challenging when teachers lack knowledge of epilepsy and are not trained in how to handle seizures.  This can sometimes lead to negative attitudes and increased stigma towards CWE. Studies have…

EpLink and the Ontario Brain Institute (OBI) are looking to gather the input of Canadians living with or caring for people with epilepsy or seizures to set the priorities for epilepsy research in Canada. If you have epilepsy or experience seizures, or if you care for or work with someone who does, we want your…

Dravet syndrome is a genetic disorder causing a severe form of epilepsy. Many people living with Dravet syndrome have neurodevelopmental problems, including cognitive delay and autism-like behaviours, and have an increased risk of sudden unexpected death in epilepsy (SUDEP). In the majority of Dravet syndrome cases, there is a mutation in the SCN1A gene. The…

Do you have questions about epilepsy that could be answered by research? If so, we want to hear from you! EpLink is excited to announce the launch of a national online survey to work directly with patients, caregivers and clinicians to better identify research priorities around epilepsy and seizures. We have teamed up with the…

Infantile spasms (IS) occur in 0.2-0.5 cases for every 1000 live births around the world, and are identified as sudden limb movements caused by seizures. Children with IS show these movements in the first year of life. IS are more likely to occur in children with a brain injury or brain tumour from tuberous sclerosis…

While most people with epilepsy live long and healthy lives, there are some situations where seizures can be life-threatening, such as when they happen in or near water. The frequency of drowning among people living with epilepsy (PWE) is nearly ten times greater than the general population. In fact, PWE have a 15-19 times greater…

For a child who is having epilepsy surgery, several tests may need to be done as part of the clinical assessment. EpLink researcher Dr. Elysa Widjaja and senior neurodiagnostic technologist Rohit Sharma have put together an information booklet to help parents navigate the different tests that may be required before surgery. Some of these are…

Clinic To Community (C2C) is a referral program for individuals with a seizure disorder or a diagnosis of epilepsy. The C2C program was developed by Epilepsy Southwestern Ontario and offers information, support and training tools to help navigate the different aspects of an epilepsy diagnosis. Their recent report, Voices from the Community, highlights the program’s…

EpLink is pleased to announce the appointment of Dr. Mary Pat McAndrews as a new co-director of the research program. Dr. McAndrews will join the existing directorship of Dr. Mac Burnham and Dr. Jorge Burneo. Dr. McAndrews is a Professor of Psychology at the University of Toronto and the director of the Neuropsychology Clinic at…

On Saturday, May 26th 2018, Epilepsy Toronto will host their annual conference in downtown Toronto. This year’s theme is Knowledge is Power, and will focus on providing up-to-date information about medical treatments for people with epilepsy and their families. Several EpLink researchers will provide updates on the following topics: Dr. McIntyre Burnham will discuss the…

One of the most important things to do before children have epilepsy surgery is identify which areas of the brain are important for functions like speech, language, and memory so that those areas can be avoided during surgery. This is difficult with language since there is more than one area in the brain involved in…

For people who have epilepsy surgery, it is important for doctors to know which areas of the brain are involved in critical functions, such as understanding language, so they can avoid these areas during surgery. One way to study these functions is by using electroencephalography, or EEG, a technique where sensors are placed on top…

In this week’s update, we are encouraging the community to get involved and help support renewed funding for the Ontario Brain Institute (OBI) and EpLink. As part of the renewal campaign, we have created a template letter that you can use to thank your Member of Provincial Parliament (MPP) for his/her past support, share your…

There are different types of epilepsy surgery to help control seizures. An important step before surgery occurs is to identify the precise area in the brain where seizures start. In resective epilepsy surgery, doctors remove the area of the brain where seizures are thought to begin. Sometimes, when seizures start in different areas, more brain…

​Video electroencephalography, or vEEG, is a widely used technique in the assessment for epilepsy surgery. vEEG is used in a hospital setting in an epilepsy monitoring unit (EMU), where a medical team can observe the physical symptoms of a person’s seizure and match these symptoms with their brain activity. This helps surgeons to identify where…

SUDEP, or sudden unexpected death in epilepsy, occurs when an otherwise healthy person with epilepsy dies suddenly or unexpectedly, and no clear cause of death can be found. Although SUDEP is rare, the risk is highest in people with uncontrolled generalized tonic clonic seizures, and it tends to occur at night or during sleep. Researchers…

Adaptive functioning (AF) describes how well a person manages the day-to-day demands of independent living. It includes motor, social, communication, personal living, and community living skills. Higher AF is associated with better educational and employment outcomes, and can predict life achievement in young adulthood for people with epilepsy. Children with epilepsy who have uncontrolled seizures,…

Small variations in DNA (the genetic material that contains a blueprint for our development) are natural and are what makes each person’s DNA code unique. However, when variation causes certain sections of DNA to disappear, it can lead to disease. This is the case with 22q11.2 deletion syndrome, or 22q11.2 DS (the name may sound…

Quality of life (QoL) is a primary concern for children with epilepsy and their families. Different factors have been associated with QoL, which means it can be difficult to predict. Dr. Gabriel Ronen and colleagues wanted to investigate why some children with epilepsy report satisfaction with their lives while others do not. If researchers can…

Research indicates that people who have suffered a traumatic brain injury (TBI) are at risk of developing epilepsy. However, it is not clear why some develop epilepsy and others do not. Dr. Jorge Burneo and his colleagues hope to shed some light on this question. Their study involves two parts: The first part looks back…

What is the relationship between epilepsy, birth weight and readiness for school? To study this question, Drs. Prasad and Corbett looked at a set of data collected over time from a group of children aged 4 to 5 years old, and compared this data with 20 children diagnosed with epilepsy using survey data collected by…

Avertus Inc., the biotechnology company founded by Drs. Peter Carlen and Berj Bardakjian, has been developing new wearable technology that can improve seizure control. Their innovative headset contains sensors that can continuously monitor electrical activity from ten different brain areas using electrodes placed on the scalp (a technique known as electroencephalography, or EEG). The information…

How do seizures affect a child’s school performance and social well-being? Previous studies have shown that children with epilepsy may have memory problems and process information more slowly, which may affect their ability to do math. Children with epilepsy are also at risk of having depression, which is linked to low self-esteem. In the present…

What are the long-term effects of epilepsy surgery? This is the question that Dr. Mary Lou Smith has been investigating in a series of research studies that have looked at the outcomes of people with drug-resistant epilepsy who had surgery as children. Dr. Smith compared people who underwent surgery with those who did not, and…

For this week’s update, we are sharing a news release from Katie’s Run (please see below). Proceeds from this year’s run will support EpLink. Please join “Team EpLink” and register for the beautiful outdoor run/walk in Haliburton on June 24. If you cannot join us, please consider making a small pledge to our team! —…

When confronted with a diagnosis of epilepsy, many people struggle with how to cope. EpLink has funded a research study to see if an epilepsy education and support services program – such as the Clinic to Community (C2C) program – can provide patients with the skills to better manage their condition and feel more confident…

People with epilepsy often have depression, which can be quite severe. Is depression a response to the difficulties of living with a chronic disorder, or is it possible that seizures themselves cause depression? An animal study from a group in California (https://www.ncbi.nlm.nih.gov/pubmed/17368107) has suggested that depression may be caused – or made worse – by…

Before we get to today’s research update, we wanted to let you know that on Thursday June 8, 2017 Epilepsy Ontario will be hosting its 4th Annual Summer Boat Cruise! This is a scenic 4-hour cruise on Lake Ontario. Tickets are $70 and include dinner, music, a silent auction and raffle / penny item sale…

It may seem like something from the future, but EpLink researchers are on their way to creating a “smart” computer chip that can detect and stop seizures before they happen. Dr. David Groppe and engineering graduate student Gerard O’Leary from the Brain Monitoring & Modulation group (formerly Seizure Prediction and Brain Stimulation) are developing a…

On Saturday, June 24, 2017, the sixth annual Katie’s Run will take place in the beautiful highlands of Haliburton, Ontario. The event offers a scenic 5 km run, 10 km run and 2.5 km run/walk all in support of research dedicated to finding a cure for epilepsy. Katie’s Run was started in honour of Katie…

As you likely already know, Purple Day is quickly approaching! Purple Day is honoured annually on March 26 and is dedicated to raising epilepsy awareness throughout the world. Since this is such as important day for our community, EpLink is planning two important initiatives that are set to take place on the Friday (March 24)…

Brain Awareness Week is a worldwide celebration of the brain that was first started by The Dana Alliance for Brain Initiatives in the United States. During Brain Awareness Week, many different health-related organizations help educate people about the brain through social media campaigns, classroom activities, online webinars, public events and other engaging activities. Brain Awareness…

Dr. Danielle Andrade and her colleagues at Toronto Western Hospital are looking into the common features of epilepsy and a genetic syndrome known as Di George syndrome or chromosome 22q11.2 microdeletion (22qCNV). People with this genetic syndrome are 7 times more likely to have epilepsy than people in the general population. In her 2013 paper,…

Working memory is the ability to hold and process information in your mind and then to use that information within a short time frame. For example, recalling each step of a recipe as you cook uses your working memory. Children with epilepsy commonly have problems with working memory, which can stem from epilepsy itself or…

Happy New Year! In honour of Bell Let’s Talk day, which is aimed at raising awareness about mental health, our research update this week will focus on two important initiatives for epilepsy and mental health. 1. How to Cope? A Discussion for People Living with Epilepsy and Depression/Anxiety EpLink and CAN-BIND: Canadian Biomarker Integration Network…

Cortical dysplasia occurs when brain cells in the cortex – the outer layer of the brain – do not develop properly. People who have cortical dysplasia often have differences in the way their brain cells are organized, and are more likely to develop drug-resistant epilepsy during their lifetime. Due to cortical dysplasia, critical brain areas…

1. Phase 3 Planning and Application As many of you are aware, much of this year has been dedicated to rethinking EpLink’s structure for 2018 and beyond. For the Ontario Brain Institute (OBI) and its programs, 2018 marks the end of a 5-year funding period known as Phase 2. This means that both OBI, and…

To better understand what may lead to seizure activity in the brain, especially in people with drug-resistant epilepsy, we need to understand the epigenetics of epilepsy. Epigenetics is the study of how genes (DNA segments, each with a specific code that determines its function) can be switched on or off by changes to the DNA…

Before seizure surgery, children with epilepsy stay in an epilepsy monitoring unit (EMU) and undergo a series of clinical tests to help find the specific area of the brain where seizures begin – the area that needs to be removed during surgery. After the surgery is performed, many children become seizure free. Does this have…

Today’s research update will focus on the results of EpLink’s Research Priorities Survey. The survey was created to obtain feedback from people living with epilepsy, their caregivers and families, and representatives from the Community Epilepsy Agencies on what research is important to them. The survey was available to the public from May 18 to September…

One of the ways to improve clinical epilepsy care is through the development of epilepsy monitoring technologies. More and more, there is a drive to develop more advanced technology to detect and monitor seizures. This would provide a great advantage, as people with epilepsy using these technologies can be warned about an upcoming seizure. But…

We are excited to announce that the First Annual Brain Benefit: Shaken Not Stirred fundraising gala is just 3 weeks away! Taking place on October 20 in downtown Toronto, this event will be co-hosted by Epilepsy Ontario and EpLink – The Epilepsy Research Program of the Ontario Brain Institute, with proceeds funding epilepsy support services…

In addition to the cutting-edge research done by EpLink, there are ongoing advances that are being made to better understand epilepsy and improve therapies. A great example of this is the opening of Canada’s first Epilepsy Diet Clinic for adults with drug-resistant epilepsy at the Krembil Neuroscience Centre (KNC) in Toronto Western Hospital – part…

EpLink’s research priorities survey will be closing this Friday, September 2 at 5 p.m. If you haven’t done so already, please complete this 3-min online survey at www.eplink.ca/researchpriorities to let us know what research is important to you. We also encourage you to share this survey with your networks. We hope to have people with…

Ms. Mary Secco and her team at the Epilepsy Support Centre have been offering a summer camp program to children with epilepsy and their siblings for the past 10 years. The majority of parents using the camp describe their child with epilepsy as ‘socially isolated’, ‘inactive’ and ‘often reluctant’ to participate in sports and recreation.…

Electroencephalography (EEG) allows doctors to measure brain activity before, during and after a seizure. This technology can also be used to identify area(s) of connected brain cells (referred to as networks) that are important for human functions, such as language. The most accurate way to identify and map brain networks involved in seizures is by…

You are invited to the First Annual Brain Benefit: Shaken Not Stirred fundraising gala on Thursday, October 20, 2016 in downtown Toronto! This event will be co-hosted by Epilepsy Ontario and EpLink – The Epilepsy Research Program of the Ontario Brain Institute, with proceeds funding epilepsy support services and research into new epilepsy treatments. Guests…

After a first seizure – or suspected seizure – it is often hard to know if an anti-seizure medication should be prescribed. Was this seizure a single event or does the person have epilepsy? To identify whether the person has epilepsy or other underlying causes that may have led to a seizure, the electrical activity…

Working memory is the ability to briefly hold information in your mind and work with it – such as remembering someone’s phone number while you look for a piece of paper to write it down. Children with epilepsy commonly experience problems with working memory, which can have an impact on their ability to learn, reason…

EpLink would like to share an announcement about the future of the research updates. We will be shifting from sending research updates weekly to sending them every other week in an attempt to minimize inbox clutter. Thanks for your interest and continued support for EpLink’s research updates!

Magnetoencephalography (MEG) is a new method for non-invasive imaging of brain activity. It is similar to electroencephalography (EEG), but it tracks brain activity using magnetic field changes rather than electrical field changes. MEG is better than EEG at tracking brain activity that occurs within the brain. MEG can also be combined with magnetic resonance imaging…

As you may know, EpLink is in the midst of identifying research priorities for our next phase of funding (2018 to 2023). To help us achieve this goal, we would like guidance and input from people with epilepsy, their families and representatives from community epilepsy agencies. We kindly ask that you provide us with your…

MRI brain scans are an essential part of the clinical tests done before seizure surgery. MRIs can help surgeons see where the part of the brain is that causes seizures, which they can then remove during surgery. But structural MRIs – those that only show the shape of the brain – cannot tell a surgeon…

When children with epilepsy reach a certain age, they must transfer from pediatric to adult hospital care. The transition can be a difficult one as healthcare providers and support levels change. This is especially difficult when the individual with epilepsy has intellectual or behavioural problems. Since 2007, there has been a Transition Epilepsy Program that…

At the time of diagnosis, individuals with epilepsy and their families often have a lot of information to sort through and process. Where can families find trusted sources of information about epilepsy? Who can support them if they have follow-up questions after diagnosis? Ms. Mary Secco has addressed the gaps in connecting people with epilepsy…

In the classic ketogenic diet, fat makes up 90% of the calories. Although proven to be effective for the management of seizures, the classic ketogenic diet is highly restrictive and can be unpleasant for some children to eat. An alternative to the ketogenic diet is the MCT ketogenic diet. The MCT diet is less restrictive…

One of the emerging topics in epilepsy research and care is Sudden Unexpected Death in Epilepsy (SUDEP), defined as the sudden and unexpected death of an otherwise healthy individual with epilepsy. Researchers are just beginning to understand what SUDEP is and how frequently it occurs, but as more research is conducted, more questions are emerging.…

One of the most important considerations when performing epilepsy surgery is to remove the seizure focus (the area of the brain where seizures begin) and avoid the healthy brain cells nearby. In doing so, patients who have surgery are less likely to experience side effects or functional deficits after surgery. When removing a seizure focus…

Physical activity can be a useful tool in managing and even preventing many health conditions. Does physical activity have an impact in epilepsy? What aspects of an individual’s life may be improved with physical activity?  Dr. Gabriel Ronen and his colleagues are conducting a randomized, controlled study to look at the benefits of increasing physical activity for overall health…

The importance of developing new drug therapies for drug-resistant epilepsy is coming to the forefront. GW Pharmaceuticals, a British drug company, has just completed an important clinical trial examining the safety and effectiveness of a drug based on the marijuana extract, cannabidiol, in children with Dravet Syndrome. Among other developmental disabilities, children with Dravet Syndrome experience…

It has been shown that group therapy programs delivered over the telephone or internet are effective in reducing depressive symptoms for people with epilepsy. A unique aspect of these programs is that they can be completed at home, which is important for adults who live in rural areas and/or without a driver’s license. Dr. Kathryn…

Seizure surgery is a potential treatment option for people that have focal seizures – seizures that are localized to one area of the brain. One of the goals of seizure surgery is to remove the injured or overactive area of the brain, which can help to manage or even cure seizures. To improve seizure surgery…

Rett Syndrome is a disorder that mainly affects females, causing intellectual disability, physical disabilities and often seizures. Rett Syndrome shares several features with other mitochondrial diseases, where there are impairments in mitochondria – the structures found within brain cells that are responsible for producing energy. Without properly functioning mitochondria in Rett Syndrome, there is a…

What puts someone at risk for developing drug-resistant epilepsy? Is there a change in an individual’s DNA (known as a genetic mutation) that can lead to drug-resistant epilepsy? To help us answer these questions and understand the complex genetics, the EpLink Genetics Program was started. This program will conduct whole genome sequencing (DNA testing) of…

Status epilepticus is an emergency situation where an individual experiences a prolonged seizure or multiple seizures one after another without a full recovery. The current standard of treatment for status epilepticus is to be admitted to the emergency room, where an individual is given an anti-seizure medication – ideally through intravenous (I.V.) injection directly to…

The risk of death for people with epilepsy is typically 2-3 times that of the average population. Although death can occur for many different reasons, some deaths are attributed to Sudden Unexpected Death in Epilepsy (SUDEP). SUDEP is the death of an otherwise healthy individual with epilepsy that occurs either immediately after a seizure or…

Brain stimulation is a new technology-based therapy that works by stimulating the area of the brain where seizures start, which prevents the seizure from occurring. Dr. Tariqus Salam, Dr. Roman Genov, Dr. Jose Luis Perez Velazquez and colleagues are currently conducting brain stimulation experiments in rodent models of epilepsy to identify the best methods for…

In previous studies, it has been shown that there is little to no change in intelligence measures (such as IQ) in short-term follow-up after epilepsy surgery in children. But what about in long-term follow-up? Do these improvements take a longer time to appear? In Dr. Mary Lou Smith’s study, participants who were seizure free at long-term follow-up…

Dr. Prasad is analyzing data collected in the National Longitudinal Survey of Children and Youth (NLSCY). The survey, which was run by Statistics Canada, has gathered information on many social and medical factors that affect children’s health in Canada. The NLSCY involved collecting data from a sample of 25,000 children ages 0-11 years, with each…

The ketogenic diet is a low carbohydrate, high fat and adequate protein diet that is effective for the management of drug-resistant seizures – and is most commonly used in children. Administration of the diet, however, requires the support of a trained dietitian. The lack of trained dietitians in many programs across Ontario limits the use…

A recent article published by Dr. Jorge Burneo and colleagues in the journal Neurology has described what happens to people during the two years after they are diagnosed as having “drug-resistant” epilepsy (also referred to as “intractable” epilepsy). Epilepsy is diagnosed as “drug-resistant” after two trials of anti-seizure medications have failed to control seizures. &nbsp…

Hope for People with Lafora Disease Lafora disease is a rare type of epilepsy that appears to be caused by changes in a single gene or a small number of related genes (what scientists refer to as ‘genetic mutations’). It is one of the most severe epileptic syndromes, leading to a decline in intellectual functioning,…

West’s Syndrome May Be Preventable. West’s syndrome is a childhood epileptic syndrome. It leads to uncontrolled seizures (known as ‘infantile spasms’), abnormal brain wave activity between seizures (referred to as ‘hypsarrhythmia’) as measured by EEG recordings and intellectual disability in four out of five children. It usually has its onset in the first year of…

A Possible Mechanism for Sudden Unexpected Death in Epilepsy Recently, Dr. Hiro Otsubo presented his work on Sudden Unexpected Death in Epilepsy (SUDEP) at one of our weekly EpLink Fellows’ Meetings. SUDEP is defined as the death of an otherwise healthy individual with epilepsy that occurs either immediately after a seizure or even when there…