Epilepsy Surgery in Early Infancy: A Retrospective, Multicenter Study

Abstract found on PubMed

Although epilepsy surgery is the only curative therapeutic approach for lesional drug-resistant epilepsy (DRE), there is reluctance to operate on infants due to a fear of complications. A recent meta-analysis showed that epilepsy surgery in the first six months of life can achieve seizure control in about two-thirds of children. However, robust data on surgical complications and postoperative cognitive development are lacking. We performed a retrospective multicenter study of infants who underwent epilepsy surgery in the first six months of life. 15 infants underwent epilepsy surgery at a median age of 134 days (IQR: 58) at four centers. The most common cause was malformation of cortical development, and 13 patients underwent a hemispherotomy. Two-thirds required intraoperative red-blood-transfusions. Severe intraoperative complications occurred in two patients including death in one infant due to cardiovascular insufficiency. At a median follow-up of 1.5 years (IQR: 1.8), 57% of patients were seizure-free. Three patients where reoperated at a later age, resulting in 79% seizure-freedom. Anti-seizure medication could be reduced in two-thirds, and all patients improved in their development. Our findings suggest that early epilepsy surgery can result in good seizure control and developmental improvement. However, given the perioperative risks, it should be performed only in specialized centers.

CURE Epilepsy Update July 2023

Greetings Epilepsy Community,

As we bask in the sun and fun of the summer season, I can’t help but look ahead to everything CURE Epilepsy has in store for the community in the coming months. First, we are super excited to share that we will be running a public service announcement to raise awareness of epilepsy on EPSN in late July during The Basketball Tournament. I am grateful for any opportunity to raise awareness around what epilepsy is, who is impacted, and why we need to fund more research. Stay tuned for more details on when it will air in an email next week!

We are also currently in the process of reviewing letters of intent for the second year of our Rare Epilepsy Partnership Award, which we hope will lead to a better understanding of rare epilepsies that impact our community. In September, we will host Epilepsy Awareness Night at a Chicago White Sox game where we will raise awareness of epilepsy and the need for research, while enjoying some wonderful weather (fingers crossed) and a fun game! Also in September, for those of you who tuned in for our virtual Unite to CURE Epilepsy programs in 2020, 2021, and/or 2022, you will be happy to know Unite to CURE Epilepsy will be returning with some fun new features. And we have much planned for October, November, and December too!

As we enter the back half of our 25th anniversary year, I’m honored to have opportunities to gather with so many of you (both live and virtually), celebrate the successes of the past 25 years, and look ahead at the promising future of epilepsy research. Thank you again for your continued support

With a commitment to inspire hope and deliver impact.

In this CURE Epilepsy Update, please find information on:

Bring Hope to Children Like Catherine

Step into Catherine’s moving epilepsy journey and explore the amazing impact of research. Your gift holds the power to give hope to children like Catherine and parents like Nora. Click now to dive deeper, discover more, and make a difference by funding critical research today.




Make a Gift


Our Newest Board Member…

Join us in welcoming our newest addition to CURE Epilepsy’s Board of Directors, Irina Colon. Irina’s daughter began experiencing seizures at four years old. Since 2019 Irina has been an active member within the CURE Epilepsy community. We look forward to Irina bringing her personal and professional experience (including a BA in Marketing and Management from the University of Illinois and an MBA in Finance from Kellstadt Graduate School of Business) to the CURE Epilepsy team.


Learn More About All CURE Epilepsy Board Members


CURE Epilepsy Discovery: Better Understanding of Post-Traumatic Epilepsy Provides a Foundation for the Development of Novel Therapies

CURE Epilepsy established the PTE Initiative in 2017 and utilized a team science approach to leverage the expertise of six research teams to develop better ways to study PTE in the laboratory, identify biomarkers that may predict risk of developing PTE, and better understand the biological pathways that lead to PTE after injury. The PTE Initiative has led to many scientific successes to date: PTE Initiative teams developed and characterized several different laboratory-based models of PTE, enhanced the understanding of the biological underpinnings of PTE, and identified potential risk factors and potential biomarkers for PTE.


Explore Discovery


Get Your Tickets for Epilepsy Awareness Night at Chicago White Sox Game

Join the CURE Epilepsy community for a very special night at the ballpark: Epilepsy Awareness Night with the Chicago White Sox on Saturday, September 2! Come celebrate CURE Epilepsy’s 25th Anniversary with a specially discounted ticket offer, plus, $5 of each ticket purchased for our selected sections will go towards epilepsy research. See the White Sox in a matchup against the Detroit Tigers, sit with other community members, and raise money for epilepsy!





Summer Sale at the CURE Epilepsy Store

There is one day left to shop the Summer Sale at The CURE Epilepsy Store! Get 15% off your final purchase (including sale items). Shop now, sale ends tomorrow! Raise epilepsy awareness while helping to fund critical epilepsy research.




Shop Now


Champion Challenge Update


Thank you to all of our CURE Epilepsy Champions for helping us stay ahead of the pace to break our Champion annual fundraising record and raise $425K in honor of our 25th anniversary! Our “Champions Challenge” is underway and is off to a strong start. Over 20 CURE Epilepsy Champion events have raised nearly $200K in critical epilepsy research funding. Here is a special message from CURE Epilepsy CEO, Beth Dean.

If you would like more information about the Champions Challenge or hosting your own unique fundraising event, please click here. Also, don’t forget that every participating Champion host will receive a free raffle entry for one trip for a family of four to Epilepsy Awareness Day 2024 at Disneyland California, including airfare, hotel, epilepsy expo, and park tickets. Also, every Champion host who raises over $1,000 will receive a CURE Epilepsy Treasure Pack, with merchandise to help show your CURE Epilepsy pride.

Thank you again for all your efforts!

Watch Thank You Video



What’s New from the Seizing Life® Podcast

Comprehensive Epilepsy Centers: An Insider’s Guide


Dr. Dave Clarke provides a thorough overview of the specialists and services available at comprehensive epilepsy centers and offers advice about when and how to access these centers.

Watch or Listen



Love, Marriage, and Epilepsy


Epilepsy advocates and married couple Tiffany and Chris Kairos talk about the impact that epilepsy has had on their marriage.

Watch or Listen




Watch these and all of our upcoming Seizing Life episodes here.

Please mark your calendar for the following key dates in the epilepsy community:

  • January 1 – December 31, 2023 – CURE Epilepsy’s 25th Anniversary
  • October 18 – SUDEP Action Day
  • October 31- November 1 – Epilepsy Awareness Day at Disneyland
  • November – Epilepsy Awareness Month
  • December 1-7 – Infantile Spasms Awareness Week


1 in 26 individuals will be impacted by epilepsy in their lifetime.
Each person has their own story.

Read Anu’s Story


Optimizing Electrode Configurations for Wearable EEG Seizure Detection Using Machine Learning

Abstract found on PubMed

Epilepsy, a prevalent neurological disorder, profoundly affects patients’ quality of life due to the unpredictable nature of seizures. However, optimizing electrode configurations for such systems, which is crucial for balancing accuracy and practicality, remains to be explored. This study addresses this gap by developing a systematic approach to optimize electrode configurations for a seizure detection machine-learning algorithm.

Our approach was applied to an extensive database of prolonged annotated EEG recordings from 158 epilepsy patients. Multiple electrode configurations ranging from one to eighteen were assessed to determine the optimal number of electrodes.

Results indicated that the performance was initially maintained as the number of electrodes decreased, but a drop in performance was found to have occurred at around eight electrodes. Subsequently, a comprehensive analysis of all eight-electrode configurations was conducted using a computationally intensive workflow to identify the optimal configurations.

This approach can inform the mechanical design process of an EEG system that balances seizure detection accuracy with the ease of use and portability. Additionally, this framework holds potential for optimizing hardware in other machine learning applications. The study presents a significant step towards the development of an efficient wearable EEG system for seizure detection.

Patterns of Psychotropic Drug Use in Veterans with Epilepsy: Do Drug Interactions Matter?

Abstract found on PubMed

Rationale: Patients with epilepsy are likely to suffer from psychiatric comorbidities, including depression and anxiety. They often require treatment with multiple psychotropic drugs (PDs). While it is clear that CYP enzyme-inducing ASMs (EIASMs) can increase the oral clearance of multiple medications (thus lowering systemic exposure), it is less clear that all PK interactions are clinically meaningful (e.g. lower efficacy). As a first step in addressing this issue, this study sought to quantify the potential impact of ASM choice, whether EIASM or non-inducer (NIASM), on surrogate markers of suggestive of clinical use, including resultant antidepressant (AD) or antipsychotic (AP) dose, frequency of combination use of AD & AP, and number of multiple drug switches of PDs. Our hypothesis is that because of PK interactions, EIAED treatment would be associated with higher psychotropic drug doses, more frequent Rx adjustments and poly psychotropic comedication, all in order to optimize therapeutic response.

Methods: Using VA pharmacy and national encounter databases, veterans with epilepsy were identified based on having a seizure diagnosis and being prescribed concomitantly an ASM and a psychotropic drug for at least 365 days between 10/1/2010 and 9/30/2014. Patients for whom psychotropic drugs were prescribed any time between beginning and end prescriptions dates of ASMs were considered. Among those, patients receiving both an EIASM + NEIASM concomitantly were categorized with the EIASM group. Patients were evaluated for AD only, AP only and both (AD & AP). To compute average drug doses per day, averages for each patient were computed and averaged again. Multiple drug switches were defined to be for patients who had been prescribed more than three psychotropic drugs during the observation period. Pearson’s Chi-Square test was used to compare relative proportions of AD, AP and AD + AP in both groups.

Results: In all, 16,188 patients were identified (57.0% on EIASM, 43.0% on NIASM) with a mean age of 58.7 years (91.2% male). A larger proportion of patients on EIASM received mono treatment with any psychotropic drug, as compared to NIASM (42.0% vs 36.1%). Among all, 59.6% received AD only, 6.5% received AP only, and 33.8% received both concurrently. Of EIASM, 62.5% were on AD, 5.9% on AP, and 31.7% on both AP & AD. For NIASM, 55.9% received AD, 7.4% AP, and 36.7% on AD & AP.Chi-square showed that the distribution of PD was statistically different between EIASM and NIASM groups. Z tests showed that each difference (AD, AP and both) in proportions was statistically significant (p values (4 tests, one Chi-square, 3 Z tests <0.001) between EIASM vs NIASM. Interestingly, mean doses of AD or AP did not appear to differ between ASM groups.

Conclusions: Concurrent psychotropic drug use is quite common in the VA population with epilepsy, and a large number of patients still receive enzyme-inducing ASMs that may complicate other medical therapies. Interestingly, in seeming contradiction to our hypothesis, mean daily doses of either AD or AP did not appear to differ between inducers vs non-inducers. Similarly, use of polytherapy, and/or multiple trials of various psychotropic drugs did not appear increased in the CYP-induced group. In fact, combination therapy of AD + AP was higher in NIASM than EIASM. These data suggest that perhaps these types of PK interactions may not in fact result in meaningful clinical differences. Since the present analyses did not include clinical psychiatric measures, future analyses examining direct clinical outcomes are clearly warranted.

Hidden Brain Circuit Linking Lesion Locations to Epilepsy 

Article published by Neuroscience News


A new study by investigators from the Brigham and Women’s Hospital, a founding member of the Mass General Brigham healthcare system, found that a common brain circuit may link different lesion locations causing epilepsy. 

In a paper published in JAMA Neurology, the researchers used a technique called lesion network mapping to identify this brain circuit with findings that point to potential targets for brain stimulation. 

“We’re learning more and more about where in the brain epilepsy comes from and what brain circuits we need to modulate to treat patients with epilepsy,” said lead author Frederic Schaper, MD, PhD, an Instructor of Neurology at Harvard Medical School and scientist at the Brigham and Women’s Center for Brain Circuit Therapeutics. 

“Using a wiring diagram of the human brain, lesion network mapping allows us to look beyond the individual lesion location and map its connected brain circuit.” 

Schaper and the team studied 5 datasets of over 1,500 patients with brain lesions. Participating centers across the US and Europe included the Brigham and Women’s Hospital, Massachusetts General Hospital, Boston Children’s Hospital, Northwestern University, and University Hospitals of Turku in Finland, Maastricht in the Netherlands, and Barcelona in Spain. 

They studied a variety of brain lesions such as stroke, trauma, and tumors, which allowed them to search for common network connections associated with epilepsy across different regions and types of brain damage. 

One of the datasets included combat veterans from the Vietnam Head Injury Study, which was originally designed in the 1960s because brain damage from combat shrapnel wounds resulted in a significant increase in the occurrence of epilepsy.  

“In our studies, up to 50 percent of Vietnam combat veterans suffered at least one seizure post-injury, sometimes many years after the injury,” said co-author Jordan Grafman, Ph.D. of the Shirley Ryan AbilityLab in Chicago. “However, it has remained unclear why lesions to some locations cause epilepsy and others don’t.” 

The Brigham researchers compared the locations of brain damage in patients that developed epilepsy to patients that did not, and found that lesions associated with epilepsy were distributed throughout the brain. 

However, these same lesion locations were connected to a common brain network, suggesting the brain connections disrupted by the lesions, rather than the locations of the lesions itself, were the key. 

These findings may have clinical implications for predicting the risk of epilepsy after brain damage. 

“If we can map a lesion to the brain network we identified, we may be able to estimate how likely someone is to get epilepsy after a stroke,” Schaper said. “This is not a clinical tool yet, but we lay the groundwork for future studies investigating the use of human brain networks to predict epilepsy risk.” 

The key brain connections they identified were not on the brain’s surface but were located deep within the brain in regions called the basal ganglia and cerebellum. The authors state that for decades, these deep brain structures have shown to modulate and control seizures in animal models of epilepsy and are hypothesized to act like a brain “brake”. 

Based on these findings, the researchers analyzed outcome data of 30 patients with drug resistant epilepsy who underwent deep brain stimulation (DBS) to treat seizures. They found that patients did a lot better if the DBS site was connected to the same brain network, they identified using brain lesions. 

Medicated Oral Film for Epilepsy, Green Concrete Among Ideas Supported by NUS Innovation Programme 

Article published by The Straits Times 


Local start-up PharLyfe+ has developed medicated oral films which can be easily administered to treat epilepsy. 

The film, made of edible polymers, is stuck inside the patient’s cheek and medicine on the film is released directly into the bloodstream. 


PharLyfe+ was one of the 14 start-ups featured at the National University of Singapore’s (NUS) Graduate Research Innovation Programme (Grip) Lift-Off Day on Wednesday. 


Grip, now in its ninth run, is a three-month structured programme that guides participants to become deep-tech entrepreneurs, translating their research into start-ups. 


At the end of the programme, teams present their start-ups to venture capitalists, incubators and industry players to secure funding and support. 


Dr Tan Poh Leng, 37, co-founder of PharLyfe+, said: “As mothers, we have seen how difficult it is to get children to take injections. Some children also have difficulty swallowing tablets, especially big ones. So we feel that our films would address these problems as they are easy to take. It can be used for the elderly as well.” 


People with epilepsy have seizures. The most common form of medication to stop the seizure is an injection to the arm or a medicine inserted to the rectum, which may be distressing for the patient and difficult to administer. 

PharLyfe+’s innovation makes administering medicine to epileptics easier. 


The buccal films are also being specialised for end-of-life care with a different combination of medicines and polymers. 

PharLyfe+ is seeking regulatory approval for the films and is conducting human trials. 

Unraveling the Myths Around Epilepsy: A Cross-Sectional Study of Knowledge, Attitude, and Practices Among Pakistani Individuals

Abstract found on PubMed

Introduction: Across its historical trajectory, epilepsy has frequently been linked to evil forces, particularly in the sub-continent. This research was created to find out if educated Pakistanis still believe that epilepsy is caused by being possessed by spirits (Jinns). The objective of the study is to assess the knowledge, attitudes, and practices (KAP) regarding epilepsy within the educated populace of Pakistan.


Method: After approval from the Ethical Review Committee, a population-based cross-sectional design was conducted in Chakwal District, Pakistan between February 1, 2018, and June 1, 2020, to evaluate the general knowledge and attitudes of the public toward epilepsy. A non-probability convenience sampling technique was utilized to recruit participants from different socioeconomic backgrounds across Chakwal District, and only individuals aged 18 years or older with at least 12 years of education were eligible to participate. A previously validated structured questionnaire was used to document findings. The study focused on several variables, such as knowledge about epilepsy and the percentage of people who have witnessed seizures, as well as sources of knowledge, subjective causes of epilepsy, beliefs in cure, transmission, and treatment options.

Results: The survey included 512 participants, and the age distribution was as follows: 18-29 years old accounted for 18% of the respondents, 30-44 years old accounted for 35%, and 45-60 years old accounted for 31%. There was a female predominance with a frequency of 312 (60.9%). When asked about their sources of knowledge about epilepsy, the majority of participants (59.57%) reported learning about epilepsy from friends and relatives. A smaller percentage (18.36%) reported learning about epilepsy from schools, while another 20.31% heard about epilepsy from media and relatives.


Conclusion: The results of this research show that the general populace of Pakistan has a serious dearth of comprehension and information about epilepsy. Participants frequently held misconceptions about epilepsy being a hereditary disease and a mental condition, highlighting the need for focused education and information efforts to dispel these falsehoods. The fact that most participants got their knowledge about epilepsy from peers and family also emphasizes the value of peer education and social networks in spreading awareness of the disease.

Sleep Problems in Adolescents with Epilepsy and their Caregivers: Associations with Behavioral Difficulties

Abstract found on PubMed

Background: The aim of this study was to investigate the frequency of sleep problems in adolescents with epilepsy and their caregivers. We also examined the behavioural difficulties in adolescents with epilepsy and compared these behaviors with healthy controls.


Methods: This observational case-control study included 37 adolescents with epilepsy and their caregivers, and 43 healthy age-matched adolescents and their caregivers. The Children`s Sleep Habits Questionnaire (CSHQ), DSM-5 Level 2 Sleep Disorders Scale for Children, and Strengths & Difficulties Questionnaire (SDQ) were used to evaluate sleep habits, sleep problems, and behavioural difficulties in adolescents. The DSM-5 sleep disorder scale for adults was used to evaluate the caregivers` sleep problems.


Results: Adolescents with epilepsy had higher sleep problem scores such as daytime sleepiness and overall sleep problems compared with healthy controls. The psychopathological symptoms such as conduct problems, hyperactivity/inattention, and total behavior were also more frequent in adolescents with epilepsy. There was a nonsignificant increase in DSM-5 sleep disturbance score in caregivers of adolescents with epilepsy. Sleep onset delay had a significant negative correlation with total behavioral difficulties (r = -0.44, p < 0.01), and emotional problems (r = -0.47, p < 0.05) in adolescents with epilepsy. Sleep duration was negatively correlated with conduct problems (r = -0.33, p < 0.05), but positively correlated with prosocial score (r = 0.46, p < 0.01) in adolescents with epilepsy. Night waking was positively correlated with total behavioral difficulties (r = 0.35, p < 0.05) and hyperactivity score (r = 0.38, p < 0.05) in adolescents with epilepsy.


Conclusions: Adolescents with epilepsy have more frequent sleep disturbances and maladaptive behaviors such as hyperactivity/inattention, and conduct problems compared with healthy controls, and their caregivers are more vulnerable to sleep problems. Moreover, we also demonstrated a strong association between sleep disturbances and behavioral problems in adolescents with epilepsy.

Epilepsy Subtypes Linked to Rare Variants, Related Genes

 Article found on GenomeWeb

 An international team led by investigators at the University of Leipzig Medical Center and the Max Planck Institute for Evolutionary Anthropology has uncovered an overrepresentation of rare genetic variants found in the general population in individuals with epilepsy, particularly those with a form known as non-acquired focal epilepsy (NAFE). 


“Our results support the hypothesis that rare variants could be important in the NAFE pathomechanism,” senior and co-corresponding author Diana Le Duc, a human genetics researcher at the University of Leipzig and the Max Planck Institute of Evolutionary Anthropology, and her colleagues wrote in the American Journal of Human Genetics on Monday, noting that the affected gene set suggests the brain extracellular matrix appears to play a central role in NAFE.

Treatment Mechanism Found for Autistic Epilepsy Patients with Ank2 Deficiency

Article Published by Korea Biomedical Review

A team of researchers from the Institute for Basic Science (IBS) said they identified a new pathogenesis and treatment strategy for autistic patients with epilepsy lacking the Ank2 gene. 
Autism spectrum disorder (ASD) is characterized by deficits in social interaction and communication, and repetitive behaviors. It is often accompanied by several co-morbidities, and about 30 percent of patients have epilepsy. Additionally, people with epilepsy are about eight times more likely to be diagnosed with autism than the general population. This suggests that the two disorders may share similar genetic variations. 
The prevalence of ASD continues to rise worldwide but the pathogenesis and treatment remain poorly understood. 
Accordingly, the study led by Professor Kim Eun-joon of the IBS Center for Synaptic Brain Dysfunctions showed how epilepsy develops in a mouse model lacking the gene ANK2, which is a genetic risk factor for autism and epilepsy.  
The researchers identified increased excitability of cortical neurons in Ank2-deficient mice, which may be because Ank2 deficiency causes cortical neurons to lose their initial segment of the axon.