News Category: Publication

CURE Epilepsy Update December 2023

Season’s Greetings Epilepsy Community!

As 2023 draws to a close with all of the accompanying anticipation, joy, and celebration, I remain incredibly moved and energized by our recent attendance at the Partners Against Mortality in Epilepsy (PAME) and American Epilepsy Society (AES) meetings. We connected with so many members of our research community, including current and former CURE Epilepsy grantees. We were thrilled to announce our newest cohort of grantees and see the ranks of our CURE Epilepsy-funded research community grow. We met with industry partners to get updates on the development of new treatments and therapies, we sat in scientific symposia to learn about the latest advancements in understanding the biological mechanisms behind seizures, and we met with our advocacy partners to collaborate on efforts to raise awareness, provide information to our community, and increase funding for research. My team left with even more ideas, connections, and motivation than ever before!

But, we are not done yet. There is still a need for a cure, and we are unrelenting in our mission. With 2024 will come new research and continued hope for the future. As we ring in the new year, we are honored to be a resource for the epilepsy community as we all strive towards finding a cure for this common and often devastating neurological disorder.

With gratitude,


In this CURE Epilepsy Update, please find information on:

Our Newest Grantees

CURE Epilepsy is honored to announce our newest CURE Epilepsy Award and Taking Flight Award grantees. We look forward to sharing how their research advances the field of epilepsy in the future. Learn more about each of our grantees and their research.

See Our Grantees

 

 

 

Help Bring Us Closer to a World Without Epilepsy

 

Scientific research is the greatest hope for the estimated 150,000 people diagnosed with epilepsy each year in the US. We rely on your continued generosity to help shape the future of epilepsy research. Make your end-of-year gift today to help ensure that no good science goes unfunded.

Help Find a Cure

 

 

Joey’s Song Live Event and Online Auction

 

Looking to have a rocking night out or find a great gift for that musician in your life while also supporting epilepsy research? Buy your tickets now for Joey’s Song, taking place January 6 in Madison, Wisconsin. Joey’s Song is a concert started in 2010 in honor of Joey Gomoll, a child with Dravet syndrome who passed away at four years old. The mission of Joey’s Song is to raise epilepsy awareness and money for epilepsy research and programs for children with special needs. Can’t attend in-person? You can also bid in the online auction for signed items from R.E.M., Sheryl Crow, Noel Gallagher of Oasis, Eddie Vedder of Pearl Jam, and more!

Learn More

 

 

Coming Soon: Epilepsy Explained, a New Video Series from CURE Epilepsy

Next month we’ll be launching a new video series, Epilepsy Explained, where epilepsy experts will answer community questions on all sorts of epilepsy topics in short, easy to understand clips. Keep an eye out for the first episode going live on Wednesday, January 17!

 

 

 

 

A New Full-Length Movie to Fight Epilepsy Stigma is in the Works

 

The short film Under the Lights, which was discussed in a 2022 Seizing Life podcast episode with film director and epilepsy advocate Miles Levin, is being made into a full-length movie, with big stars and bigger hearts to fight stigma via the big screen.

 

Learn More

 

Infantile Spasms Awareness Week Recap

Each year, the epilepsy community designates the first week of December as Infantile Spasms Awareness Week. This year, CURE Epilepsy and other consortium partners highlighted what infantile spasms (IS) is, how to identify the signs, why it is a medical emergency, and more. If you missed the content earlier this month, review it now here.

 

See IS Resources

 

CURE Epilepsy at AES Annual Meeting

 

Members of the CURE Epilepsy team were educated, motivated, and inspired at the 2023 AES Meeting. We saw new and familiar faces at our CURE Epilepsy reception, announced our latest grantees, attended presentations on new research from former grantees, and more. We look forward to participating in the 2024 AES Meeting next year!

 

 

 

What’s New from the Seizing Life® Podcast

Regenerative Brain Cell Therapy: One Woman’s Journey to Seizure Freedom

 

Annette Adkins, who has lived with intractable epilepsy since 2014, discusses the impacts of epilepsy on her professional and personal life, and how it led her to participate in a revolutionary clinical trial for regenerative stem cell therapy that has brought her seizure freedom.

Watch or Listen

 

 

Infantile Spasms: The Facts, The Research, and The Hope for the Future

 

In recognition of Infantile Spasms Awareness Week, we spoke with epilepsy research scientist Dr. Chris Dulla of Tufts University about infantile spasms – what we know, what recent research has revealed, and how current research may lead to better detection and treatments.

Watch or Listen

 

 

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

The CURE Epilepsy Store

 

Help raise awareness for epilepsy and the need for a cure with CURE Epilepsy apparel or accessories.

 

 

 

 

Shop

 

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

Read Josh’s Story

 

CURE Epilepsy Update November 2023

Greetings Epilepsy Community,

We are in the midst of Epilepsy Awareness Month and Thanksgiving is only a few short days away. There is much to update you on!

Some highlights from our incredibly busy month so far . . . We kicked off November with Epilepsy Awareness Day at Disneyland, which was fantastic! There were many, many opportunities for families to gather information on treatments, advancements, and support services. We moderated an inspiring session on a new regenerative cell therapy in development for mesial temporal lobe epilepsy, recorded two episodes of Seizing Life, and showcased board member Kelly Cervantes’ new book Normal Broken. The following week, I had the privilege of attending the Isaiah Stone Foundation Golf Tournament in Oklahoma City and joining them in increasing awareness of the prevalence and impact of epilepsy while raising funds and enjoying a beautiful day. We also supported our CURE Epilepsy Champions running the NYC Marathon and celebrated the first annual Jeavons Syndrome Awareness Day.  And just this week, we participated in a Congressional Briefing by the bipartisan Epilepsy Caucus in Washington DC. All of this and it is only the middle of November!

As we prepare to celebrate Thanksgiving next week and the blessings that we have in our lives, I want to take a moment and thank you. Thank you for opening and reading this CURE Epilepsy Update. Thank you if you have been a CURE Epilepsy Champion or have run with Team CURE Epilepsy in a marathon. Thank you for following us on social media and helping spread epilepsy awareness as well as the need for more epilepsy research with your network. Thank you to SK Life Science for their generosity in matching all of the donations made during Epilepsy Awareness Month up to $50k. Thank you for choosing to support CURE Epilepsy on Giving Tuesday. Thank you for sharing our vision to live in a world without epilepsy. Thanks to all of you, we are closer now than we have ever been before.

Have a wonderful Thanksgiving holiday!

With gratitude,


In this CURE Epilepsy Update, please find information on:

Epilepsy Awareness Month

This Epilepsy Awareness Month, CURE Epilepsy is highlighting the journey 1 in 26 people will go through at some point in their lifetime — the epilepsy journey. We’ve already uncovered the first and second points along the journey. Check out the event page for resources on Starting the Epilepsy Journey and Working Towards a Diagnosis, and check back every Monday during Epilepsy Awareness Month for a new point to be uncovered with additional resources.

See the Epilepsy Journey

 

 

Giving Tuesday Save the Date

Giving Tuesday, a global day of giving, is just around the corner. You can easily add the event to your calendar for ease below, or you can donate early now! Thanks to the generosity of SK Life Science, all donations through Epilepsy Awareness Month will be matched up to $50,000! Donate today and you can double your impact.

Donate Now

 

 

 

Add Giving Tuesday to your calendar now!

AppleGoogleOffice 365OutlookOutlook.comYahoo

 

Recap of the First-Ever Jeavons Syndrome Awareness Day

As part of the work that CURE Epilepsy is doing to jump-start conversations on Jeavons syndrome, we were excited to launch an annual awareness day this year on November 13 to draw attention to this little-researched rare epilepsy.  Learn more about Epilepsy with Eyelid Myoclonia (EEM), formerly known as Jeavons syndrome, on the event page or read a personal story of a young woman with Jeavons syndrome here.

 

Learn More

 

What’s New from the Seizing Life® Podcast

Epilepsy in Women: Challenges, Concerns, and Considerations

 

Dr. Elizabeth Gerard, epileptologist and Director of the Women with Epilepsy Program at Northwestern Medicine’s Comprehensive Epilepsy Center, about the unique concerns specific to women living with epilepsy. From puberty to menstruation, contraception, pregnancy, and menopause, we explore managing epilepsy through all stages of a woman’s life.

Watch or Listen

 

 

NYC Marathoner Achieves Seizure Control and Runs for Epilepsy Research

 

Kelly speaks with Peter Burpee, who experienced absence epilepsy in childhood and tonic-clonic seizures in his teen years. Peter has gained seizure control and just ran for Team CURE Epilepsy in the NYC Marathon to raise money for epilepsy research.

Watch or Listen

 

 

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

Epilepsy Awareness Month Sale in the CURE Epilepsy Store

 

Enjoy 20% off all orders over $50 during Epilepsy Awareness Month in the CURE Epilepsy Store! Sale ends December 1.

 

 

 

Shop Sale

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

  • January 1 – December 31, 2023 – CURE Epilepsy’s 25th Anniversary
  • 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 Nora’s Story

 

CURE Epilepsy Update October 2023

Greetings Epilepsy Community,

I hope that you are all enjoying the cooler temperatures, fall activities, and at least where we are, spectacular fall foliage. The end of the year is a very busy time for the epilepsy community, and this year is no different. In October alone, we have hosted a special New York City event, a Hamilton raffle, two Treatment Talks, and many CURE Epilepsy Champion events. On a personal note, my son is a CURE Epilepsy Champion and ran the Chicago Marathon for us last year. This weekend, he will be running the Marine Corps Marathon in Washington DC to raise funds for post-traumatic epilepsy research, which is important for our wounded veteran community. It will be a special race for him as he is a 1stLt in the Marine Corps. You can support his run here. As a CEO and a proud mother, I am honored to have each and every one of you supporting us as we continue our mission to find a cure for epilepsy.

As we enter the final months of our 25th anniversary year, we are undertaking exciting strategic planning and visioning on the next chapter for the organization. As we think about how to update our messaging and improve our website, we would appreciate your participation in an anonymous five-to-ten-minute brand and website survey. Thank you in advance for helping us serve the epilepsy community in ways that continually evolve to meet new needs!

Finally, as many of you know, Sudden Unexpected Death in Epilepsy (SUDEP) Action Day took place last week. It is an important day within our community to both increase education and raise awareness among those unfamiliar with this devastating and often not talked about outcome. Since CURE Epilepsy pioneered the first SUDEP research almost 20 years ago, we have funded initiatives that study why SUDEP occurs and how it can be prevented. Just as I look forward to a day when we have a world without epilepsy, I look forward to a time when no individual passes away due to SUDEP. Until that day comes, I encourage you to review our SUDEP Action Day resources and share them with your family and friends. Doing so might save a life.

With a commitment to inspire hope and deliver impact.


In this CURE Epilepsy Update, please find information on:

Brand and Website Survey

We want your feedback! Please complete this short survey about our communications and website to help us evolve and improve our resources.

Take Survey

 

 

 

 

Over $275,000 Raised for Future Research Thanks to Hamilton Unplugged!

Thank you to everyone who was in The Room Where It Happened on Monday, October 23 for Hamilton Unplugged! With your help, we raised over $275,000 for critical epilepsy research. Guests enjoyed a phenomenal performance by Miguel Cervantes and his Broadway friends, including never-before-seen musical mashups, hilarious behind-the-scenes stories from the Hamilton stage, and more.

 

 

 

Thank You to Our CURE Epilepsy Champions

Thank you to our recent CURE Epilepsy Champions who have helped us raise critical epilepsy research funds and who are getting us closer to completion of the 25th Anniversary Champions Challenge – raising $425K for 25 years! Kris Sadens ran, biked, and swam in honor of his son Silas and the 10-year anniversary of Silas’ diagnosis, by participating in the Chicago Triathlon. Erin Monast, her daughter Reagan, and her family hosted the second annual Reagan’s Run, a 5K and 1-mile fun run in Eastern Pennsylvania. Champions also got out their golf clubs from coast to coast to raise funds and awareness for epilepsy in two separate events. The 5th annual Commish Open, in memory of Aiden Nichols Long, was held on September 27 in Maryland and the 3rd annual Epilepsy Awareness Golf Tournament honoring Colton Grothe and Joey Hart in Willamette Valley Oregon was held on October 9.

If you would like more information about the Champions Challenge or hosting your own unique fundraising event, click here. 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.

Become a CURE Epilepsy Champion

CURE Epilepsy Discovery: Leading the Charge on Research and Awareness of Sudden Unexpected Death in Epilepsy

In our latest CURE Epilepsy Discovery, we showcase CURE Epilepsy’s work within the SUDEP space. Over the past 25 years, CURE Epilepsy has funded transformative science and significantly furthered awareness of SUDEP, and we will continue to prioritize this important area of research going forward in hopes of eventually preventing this tragic outcome. Read about some of the research and projects we have funded.

Read this Discovery

 

 

Treatment Talks on Seizure Emergencies and Childhood Absence Epilepsy Now Available

Two new Treatment Talks were recently released! In the Treatment Talk Diagnosis, Treatment, and Prognosis of Childhood Absence Epilepsy, viewers learn about absence epilepsy, including how it is diagnosed, current treatments available for childhood absence epilepsy, the prognosis for those diagnosed with childhood absence epilepsy, and some of the current research that is occurring in the field. In our Treatment Talk Seizure Emergencies: Delivery Methods and Treatment Options, viewers learn about seizure emergencies, the different delivery options that are available for current rescue medications, and how the recent medications on the market have become more convenient and effective treatment options for seizure emergencies.

 

Watch Childhood Absence Epilepsy Treatment Talk

Watch Seizure Emergencies Treatment Talk

What’s New from the Seizing Life® Podcast

Infantile Spasms Diagnosis and Treatment Journey Inspires Children’s Book

 

Kate Kostolansky shares her daughter Charlotte’s infantile spasms journey and explains how these experiences inspired a children’s book designed to help newly-diagnosed families and those around them better understand infantile spasms.

Watch or Listen

 

 

Searching for Answers, Providing Support, and Understanding Grief After the Death of a Child

 

In observance of SUDEP Action Day on October 18, we spoke with Dr. Richard Goldstein, Associate Professor of Pediatrics at Harvard Medical School, about the program he directs conducting research into both Sudden Unexpected Death in Pediatrics (SUDP) and the grieving process of bereaved parents.

Watch or Listen

 

 

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

The CURE Epilepsy Store

 

Check out the CURE Epilepsy Store to get apparel or accessories to raise epilepsy awareness in time for Epilepsy Awareness Month!

 

 

 

Shop Now

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

  • January 1 – December 31, 2023 – CURE Epilepsy’s 25th Anniversary
  • October 31- November 1 – Epilepsy Awareness Day at Disneyland
  • November – Epilepsy Awareness Month
  • November 13 – Jeavons Syndrome Awareness Day
  • 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.

Hear Dylan’s Story

 

CDKL5-Mediated Developmental Tuning of Neuronal Excitability and Concomitant Regulation of Transcriptome

Abstract found on PubMed

Cyclin-dependent kinase-like 5 (CDKL5) is a serine-threonine kinase enriched in the forebrain to regulate neuronal development and function. Patients with CDKL5 deficiency disorder (CDD), a severe neurodevelopmental condition caused by mutations of CDKL5 gene, present early-onset epilepsy as the most prominent feature. However, spontaneous seizures have not been reported in mouse models of CDD, raising vital questions on the human-mouse differences and the roles of CDKL5 in early postnatal brains. Here, we firstly measured electroencephalographic (EEG) activities via a wireless telemetry system coupled with video-recording in neonatal mice. We found that mice lacking CDKL5 exhibited spontaneous epileptic EEG discharges, accompanied with increased burst activities and ictal behaviors, specifically at postnatal day 12 (P12). Intriguingly, those epileptic spikes disappeared after P14. We next performed an unbiased transcriptome profiling in the dorsal hippocampus and motor cortex of Cdkl5 null mice at different developmental timepoints, uncovering a set of age-dependent and brain region-specific alterations of gene expression in parallel with the transient display of epileptic activities. Finally, we validated multiple differentially expressed genes (DEGs), such as glycine receptor subunit 2 and cholecystokinin, at the transcript and/or protein levels, supporting the relevance of these genes to CDKL5-regulated excitability. Our findings reveal early-onset neuronal hyperexcitability in mouse model of CDD, providing new insights into CDD etiology and potential molecular targets to ameliorate intractable neonatal epilepsy.

CURE Epilepsy Update September 2023

Greetings Epilepsy Community,

There is no other way to start this Update than with a thank you. CURE Epilepsy has been busy these past few weeks with everything from our webinar on Jeavons syndrome to our first-ever Epilepsy Awareness Night with the Chicago White Sox to our virtual event UNITE to CURE Epilepsy, which culminated with a Day of Giving on the anniversary of our founding 25 years ago. So many of you participated in UNITE to CURE Epilepsy (and if you were unable to attend live, you can still watch the recordings here), families joined the CURE Epilepsy community at the Chicago White Sox game to raise epilepsy awareness and have a night of fun, and 177 donors from 38 states helped us raise money to find a cure during our Day of Giving. If you look at the map below and see your state has not yet given, make a donation to help us color it in so that we have all 50 states represented!

Thank you to our entire community. Whether you attended any of our recent events, made a donation, or helped spread awareness, you made a difference in the lives of those living with epilepsy and have helped drive us closer to finding a cure.

With a commitment to inspire hope and deliver impact.


In this CURE Epilepsy Update, please find information on:

Thank You for Helping Us Reach Over $80K During Our Day of Giving

Thanks to the generous support of our donors, individuals from 38 states have helped bring us closer to finding a cure for epilepsy. There is still time to make a gift and through our generous donor match, your gift will go three-times as far! Donate $25 and we will get $75. Donate $100 and we will get $300!

 

 

Make a Gift

 

ReSearching to CURE Epilepsy Report

Read our latest ReSearching to CURE Epilepsy report to see the impact CURE Epilepsy has had on the epilepsy community over the past 25 years and the research we are funding to help us find a cure.

 

 

 

See CURE Epilepsy’s Impact

 

My Shot at Epilepsy Hamilton Raffle – Coming Soon!

Miguel Cervantes will wrap up his incredible run as Broadway’s Hamilton early next year, so don’t throw away your shot to see him perform One Last Time! You’ll be able to enter for your chance to win tickets to see the Tony Award-winning musical in New York City and meet Miguel after the show. Raffle tickets will be available for purchase soon, so stay tuned for details!

 

 

Learn More

 

Epilepsy Discovery: CURE Epilepsy’s Efforts Lead to an Increased Understanding of Epilepsy with Eyelid Myoclonia (EEM), Formerly Known as Jeavons Syndrome

To better understand the clinical symptoms and treatment of Epilepsy with eyelid myoclonia (EEM), formerly known as Jeavons syndrome, CURE Epilepsy convened a panel of expert neurologists and individuals with lived experience to summarize existing knowledge, develop consensus about the diagnostic approach and clinical management, and identify areas where further study is needed.

 

Read Discovery

 

Limited Tickets Available for Hamilton Unplugged in New York

Get your tickets now for Hamilton Unplugged on October 23 in NYC. Join Broadway star Miguel Cervantes, the longest-running lead of Hamilton starring in both Chicago and New York City, for a special, interactive evening of conversation and song. This intimate gathering of only 200 guests will feature an exclusive performance by Miguel and some of his friends with proceeds going to CURE Epilepsy.

 

Learn More

 

Miss UNITE to CURE Epilepsy 2023? Check Out the Recordings!

Did you miss our annual virtual event UNITE to CURE Epilepsy? Check out the recordings of the live events, resources, and more here!

 

 

 

Event Site

 

 

What’s New from the Seizing Life® Podcast

A Young Woman’s Journey with Jeavons Syndrome

 

Recent college graduate and CURE Epilepsy’s Marketing and Communications summer intern, Kiley Flowers, joins us to talk about Jeavons syndrome and share her personal journey with this rare form of generalized epilepsy.

Watch or Listen

 

 

Pursuing Effective Epilepsy Treatment and Running for Research

 

Clare Phelps shares the difficult diagnosis and frustrating treatment journey of her young daughter Sophie, whose epilepsy has so far been treatment resistant.

 

Watch or Listen

 

 

 

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

The CURE Epilepsy Store

 

Check out the CURE Epilepsy Store to get apparel or accessories to raise epilepsy awareness!

 

 

 

 

Shop Now

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
  • November 13 – Jeavons Syndrome Awareness Day
  • 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 Kiley’s Story

 

RNA Therapeutics for Epilepsy: An Emerging Modality for Drug Discovery

Abstract found on PubMed

Drug discovery in epilepsy began with the finding of potassium bromide by Sir Charles Locock in 1857. The following century witnessed the introduction of phenotypic screening tests for discovering antiseizure medications (ASMs). Despite the high success rate of developing ASMs, they have so far failed in eliminating drug-resistance and in delivering disease-modifying treatments. This emphasises the need for new drug discovery strategies in epilepsy. RNA-based drugs have recently shown promise as a new modality with the potential of providing disease-modification and counteracting drug-resistance in epilepsy. RNA therapeutics can either be directed toward non-coding RNAs (ncRNAs), such as microRNAs (miRNAs), long ncRNAs (lncRNAs), and circular RNAs (circRNAs), or towards messenger RNAs (mRNAs). The former show promise in sporadic, non-genetic epilepsies as interference with ncRNAs allow for modulation of entire disease pathways, while the latter seems more promising in monogenic childhood epilepsies. Here, we describe therapeutic strategies for modulating disease-associated RNA molecules and highlight the potential of RNA therapeutics for the treatment of different patient populations such as sporadic, drug-resistant epilepsy, and childhood monogenic epilepsies.

2-Photon Imaging of Fluorescent Proteins in Living Swine

Abstract found on PubMed

Featuring the work of CURE Epilepsy’s PTE Initiative Massachusetts General Team

A common point of failure in translation of preclinical neurological research to successful clinical trials comes in the giant leap from rodent models to humans. Non-human primates are phylogenetically close to humans, but cost and ethical considerations prohibit their widespread usage in preclinical trials. Swine have large, gyrencencephalic brains, which are biofidelic to human brains. Their classification as livestock makes them a readily accessible model organism. However, their size has precluded experiments involving intravital imaging with cellular resolution. Here, we present a suite of techniques and tools for in vivo imaging of porcine brains with subcellular resolution. Specifically, we describe surgical techniques for implanting a synthetic, flexible, transparent dural window for chronic optical access to the neocortex. We detail optimized parameters and methods for injecting adeno-associated virus vectors through the cranial imaging window to express fluorescent proteins. We introduce a large-animal 2-photon microscope that was constructed with off-the shelf components, has a gantry design capable of accommodating animals > 80 kg, and is equipped with a high-speed digitizer for digital fluorescence lifetime imaging. Finally, we delineate strategies developed to mitigate the substantial motion artifact that complicates high resolution imaging in large animals, including heartbeat-triggered high-speed image stack acquisition. The effectiveness of this approach is demonstrated in sample images acquired from pigs transduced with the chloride-sensitive fluorescent protein SuperClomeleon.

Nocturnal Seizure Detection: What are the Needs and Expectations of Adults with Epilepsy Receiving Secondary Care?

Abstract found on PubMed

Introduction: Seizure detection devices (SDDs) may lower the risk of sudden unexpected death in epilepsy (SUDEP) and provide reassurance to people with epilepsy and their relatives. We aimed to explore the perspectives of those receiving secondary care on nocturnal SDDs and epilepsy in general.

Materials and methods: We recruited adults with tonic or tonic-clonic seizures who had at least one nocturnal seizure in the preceding year. We used semi-structured interviews and questionnaires to explore their views on SDDs and their experiences of living with epilepsy. None of the participants had any previous experience with SDDs. We analyzed the data using qualitative content analysis.

Results: Eleven participants were included with a nocturnal seizure frequency ranging from once every few weeks to less than once a year. Some participants experienced little burden of disease, whereas others were extremely impaired. Opinions on the perceived benefit of seizure detection varied widely and did not always match the clinical profile. Some participants with high SUDEP risk displayed no interest at all, whereas others with a low risk for unattended seizures displayed a strong interest. Reasons for wanting to use SDDs included providing reassurance, SUDEP prevention, and improving night rest. Reasons for not wanting to use SDDs included not being able to afford it, having to deal with false alarms, not having anyone to act upon the alarms, having a relative that will notice any seizures, not feeling like the epilepsy is severe enough to warrant SDD usage or not trusting the device.

Conclusions: The interest in nocturnal seizure detection varies among participants with low seizure frequencies and does not always match the added value one would expect based on the clinical profile. Further developments should account for the heterogeneity in user groups.

One-Day Psychosocial Education Program for People with Epilepsy: A Continuation Study of the “Epi-School”

Abstract found on PubMed

Psychosocial education programs for people with epilepsy (PWE) can improve epilepsy knowledge and quality of life (QOL), whereas the availability of these programs is limited in Japan compared to other developed countries. This study evaluated the feasibility and effectiveness of a one-day group psychosocial education program named the “one-day Epi-school” for PWE and their relatives. The previous program (Epi-school) required consistent participation in three sessions, resulting in problems with program continuation rates, with 45.5% of PWE completing the program. Therefore, the “one-day Epi-school” was designed to provide information about epilepsy and address psychosocial issues related to coexisting epilepsy symptoms, such as self-stigma and self-esteem, while allowing participants to accomplish these programs within a single day. The study recruited a sample of 32 PWE and their relatives from a psychiatric clinic. They completed assessments of knowledge, self-stigma, self-esteem, and quality of life before and after the program. The results exhibited a significant increase in epilepsy knowledge after the intervention for PWE and their relatives. However, we could not identify other significant changes. The participation completion rate was 100%. The post-participation questionnaire proved beneficial to interact with other PWE. The study suggests that a single intervention, e.g., the one-day Epi-school, may be insufficient for enhancing other factors, yet it can be an adequate opportunity for learning and interacting. It is also necessary to implement future studies with larger sample sizes, a control group, and prolonged follow-up periods for the program’s value and validity.

Cognitive Effect of Antiseizure Medications in Medial Temporal Lobe Epilepsy  

Abstract found on PubMed

 

Background and purpose: The specific effects of antiseizure medications (ASMs) on cognition are a rich field of study, with many ongoing questions. The aim of this study was to evaluate these effects in a homogeneous group of patients with epilepsy to guide clinicians to choose the most appropriate medications. 

 

Methods: We retrospectively identified 287 refractory patients with medial temporal lobe epilepsy associated with hippocampal sclerosis. Scores measuring general cognition (global, verbal and performance IQ), working memory, episodic memory, executive functions, and language abilities were correlated with ASM type, number, dosage and generation (old vs. new). We also assessed non-modifiable factors affecting cognition, such as demographics and epilepsy-related factors. 

 

Results: Key parameters were total number of ASMs and specific medications, especially topiramate (TPM) and sodium valproate (VPA). Four cognitive profiles of the ASMs were identified: (i) drugs with an overall detrimental effect on cognition (TPM, VPA); (ii) drugs with negative effects on specific areas: verbal memory and language skills (carbamazepine), and language functions (zonisamide); (iii) drugs affecting a single function in a specific and limited area: visual denomination (oxcarbazepine, lacosamide); and (iv) drugs without documented cognitive side effects. Non-modifiable factors such as age at testing, age at seizure onset, and history of febrile seizures also influenced cognition and were notably influenced by total number of ASMs.

 

Conclusion: We conclude that ASMs significantly impact cognition. Key parameters were total number of ASMs and specific medications, especially TPM and VPA. These results should lead to a reduction in the number of drugs received and the avoidance of medications with unfavorable cognitive profiles.