Epilepsy Research in Low-Resource Areas: The Complexities of Data and Consent

Article published by Newswise

Although 80% of people with epilepsy live in low- and middle-income countries (LMICs), most epilepsy research originates in high-income regions. Initiating and perpetuating epilepsy research in LMICs requires addressing economic, ethical, human resource, and infrastructure challenges. Without knowing how many people are affected by epilepsy, governments, academia, and other organizations cannot prioritize research and care. In some countries, there are so few studies that existing data are often analyzed and applied in non-representative ways. A 2023 article on ethical and validity issues in low-income countries described the diversity of epilepsy-related factors in Africa. “Africa is a diverse continent; a study done in one part may have totally different data compared with a study done in another part,” said Samson Gwer, senior author of the study. “But because of the paucity of studies, the data that does exist is taken to be representative of the whole of Africa.” Pauline Samia, chair of the Department of Pediatrics and Child Health at Aga Khan University, Nairobi, and first author of the 2023 study noted, I believe the same can be said of various other countries in Africa, and parts of Asia. We need to generate a lot more research, so the data are representative.  Compared with people with epilepsy in higher-resource countries, people in LMICs may have less education and awareness about epilepsy and may be affected by stigma, misinformation, and myths that make it less likely they will be open about their epilepsy or understand the importance of participating in research. The authors of the 2023 paper recommend that researchers deliberately consider individual protection, clear communication, direct benefits of research, and effective stakeholder participation, noting that establishing these practices in LMICs can be more of a financial and time burden due to undeveloped or underdeveloped infrastructure.

Death Rate Higher than Expected for Patients with Functional, Nonepileptic Seizures

Article published by Newswise

The death rate for patients with functional, nonepileptic seizures is higher than expected, with a rate comparable to epilepsy and severe mental illness, a Michigan Medicine-led study finds. In the largest study of its kind in the United States, a team of researchers reviewed data from 700 patients diagnosed with functional seizures, also called psychogenic or nonepileptic seizures. Of the 700 patients with functional seizures, 11 of them died — a death rate almost 2.5 times the number of people who would be expected to die over the same time period among similar people without functional seizures. “Functional seizures have long been stigmatized among health professionals, and our results highlight the serious nature of the diagnosis,” said senior author Nicholas J. Beimer, M.D. “All of the patients who died in our study had significant medical comorbidities and this should encourage us to care for patients with functional seizures from a holistic perspective, considering both their mental health and medical condition at the same time, rather than apart,” said co-author Elissa H. Patterson, Ph.D. “The goal is to get these patients the right treatment and soon as possible.”

Infantile Spasms: Speeding Referrals for All Infants

Article published by EurekAlert

Infantile epileptic spasms syndrome (IESS), often called infantile spasms (IS), is the most common form of epilepsy seen during infancy. Prompt diagnosis and referral to a neurologist are essential. A recent study found that Black children and children with public insurance are less likely to receive a standard treatment course for IESS. This prompted Boston Children’s neurology fellow Christina Briscoe Abath, MD, and her mentor Chellamani Harini, MD, to take a closer look at care for IS in infants from historically marginalized racial/ethnic backgrounds and create a new open-access training module for front-line providers in OPENPediatrics, an online learning community. The free, publicly accessible IS curriculum includes short lectures and videos illustrating IS to help primary care providers identify IESS and ensure prompt treatment. Through self-assessments at the end of each chapter, clinicians can test their diagnostic skills and hone their instincts. The module also invites clinicians to consider the reasons for inequities in the evaluation of IESS and how they might act to decrease the disparities. 

How Yoga May Help Reduce Epilepsy Seizures, Anxiety

Article published by Medical News Today

A new study in Neurology reports that doing yoga may help reduce seizure frequency, anxiety, and feelings of stigma that frequently comes with having epilepsy. “People with epilepsy often face stigma that can cause them to feel different than others due to their own health condition and that can have a significant impact on their quality of life,” said Dr. Manjari Tripathi, a study author and neurologist with the All India Institute of Medical Sciences in New Delhi. “This stigma can affect a person’s life in many ways including treatment, emergency department visits, and poor mental health. Our study showed that doing yoga can alleviate the burden of epilepsy and improve the overall quality of life by reducing this perceived stigma.” Researchers looked at people with epilepsy with an average age of 30 in India. They measured stigma based on participants’ answers to questions about being discriminated against, feeling different from other people, and whether they feel they contribute to society. The scientists then identified 160 people meeting the criteria for experiencing stigma. Participants averaged one seizure per week and, on average, took at least two antiseizure medications. The team then randomly selected subjects to receive yoga therapy or sham yoga therapy. Researchers reported that people doing yoga were more likely to have reduced perception of stigma. The team also discovered people who did yoga were more than four times as likely to have more than a 50% reduction in their seizure frequency after six months than the people who did sham yoga. There was also a significant decrease in anxiety symptoms for those who did yoga compared to people who did not. Researchers said they saw improvements in quality of life measures and mindfulness.

Sleep and Stress Hormones Key to Understanding Epilepsy Seizures

Article published by News Medical Life Science

Sleeping patterns and stress hormones could be the key to understanding how and when people with epilepsy are likely to experience seizures, a new study reveals. Classically, seizures were assumed to occur at random until the discovery of rhythms of epileptiform discharge (ED) activity in individuals with epilepsy that vary from hours to months. Researchers used mathematical modeling to understand the impact of different physiological processes, such as sleep and changes in concentration of the stress hormone cortisol, on ED  signatures from 107 people with idiopathic generalized epilepsy. The researchers discovered two subgroups with distinct distributions of ED: one group had the highest incidence during sleep and the other during daytime. ED frequency increased during the night, early in the morning, and in stressful situations in many people with epilepsy. The researchers’ mathematical model described the activity of connected brain regions, and how the excitability of these regions can change in response to different conditions such as between sleep stages or variation in the concentration of cortisol. Their findings reveal that either the dynamics of cortisol or sleep stage transition, or a combination of both, explained most of the observed distributions of ED and may provide a framework for better understanding the timing of seizure activity.

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!

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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

 

CHOP Researchers Develop First-of-Its-Kind Prediction Model for Newborn Seizures

Article published by Pharmacy Practice News

Researchers from Children’s Hospital of Philadelphia (CHOP) have developed a prediction model that determines which newborn babies are likely to experience seizures in the neonatal ICU (NICU). Neonatal seizures are a common neurologic issue in newborn babies. Approximately 30% of newborn babies with a temporary lack of oxygen to the brain (known as hypoxic-ischemic encephalopathy, or HIE) will have seizures. Most of these seizures can only be detected through EEG monitoring and not simply through clinical observation. This model could be incorporated into routine care to help the clinical team decide which babies will need EEGs and which babies can be safely managed in the NICU without monitoring through EEGs. This would allow families and providers to care for babies without intrusive and unnecessary procedures. The study team has made the model available as an online tool for the community.

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

 

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

 

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.