News Topics: CBD

Epilepsy Research News: September 2023

This issue of Epilepsy Research News includes summaries of articles on:

 

 

The Cerebellum as a Source of Generalized Convulsive Seizures

A recent study provides new insights into how convulsive seizures happen, implicating a “circuit” in the brain, specifically a connection of neurons between the cerebellum and thalamus, in driving convulsive seizures. To investigate the importance of this circuit in causing seizures, the team utilized a technique called optogenetic imaging to record the activity of neurons in the brain before, during, and after convulsive seizures. The team found that a group of neurons in a specific area of the thalamus called the ventral posteromedial nucleus were initiating convulsive seizures. The team then found that neurons in the cerebellum that connect to this area of the thalamus not only significantly contribute to the seizures, but that blocking activity from the cerebellum to the thalamus blocked seizures from occurring. The team noted that the findings not only deepen the understanding of how seizures originate but also create the possibility of targeting this cerebellum-thalamus circuit to treat convulsive seizures.

Learn More

 

Examining the Benefit of Rapid Genome Sequencing for Infantile Epilepsy

A recent study shows that rapid genome sequencing (a process that looks for changes across the entire genome) can provide a rapid diagnosis of genetic mutations and influence clinical care of infants with new-onset epilepsy. As part of this study, researchers sequenced the genomes of 100 infants with unexplained seizures along with their parents to better understand the potential diagnostic value of this approach for infantile epilepsy. The researchers found that across all children enrolled in the study, 43% received a diagnosis within weeks, and that diagnosis impacted the medical outcomes in nearly 90% of those cases, guiding treatment options for over half. This study provides an initial framework for further investigation of the long-term benefits of early genetic diagnosis in infants, and the potential use of targeted “precision” treatments that are specific to an infant’s genetic diagnosis.

Learn More

 

Large Genetic Study Provides Insights on Why Epilepsy Develops and Potential Treatments

The largest genetic study of its kind has discovered specific changes in our DNA that increase the risk of developing epilepsy. The research advances our knowledge of why epilepsy develops and may inform the development of new treatments for the condition. The researchers identified 26 distinct areas in our DNA that appear to be involved in epilepsy. This included 19 which are specific to a particular form of epilepsy called genetic generalized epilepsy. They were also able to identify 29 genes within these DNA regions that probably contribute to epilepsy. The researchers also showed that many of the current medications for epilepsy work by targeting the same epilepsy risk genes that were highlighted in the study. Furthermore, based on their data, the researchers were able to propose some potentially effective alternative drugs. The researchers noted that these discoveries, only achieved through international collaboration, help us to better understand the genetics of this type of epilepsy and potential treatments.

Learn More

 

Preventive Epilepsy Treatment with Vigabatrin Does Not Improve Neurocognitive Development in Infants with Tuberous Sclerosis Complex (TSC)

In new study results, researchers found that administering the preventive epilepsy treatment vigabatrin (Sabril ®) prior to seizure onset did not improve neurocognitive outcomes in TSC infants at two years of age. In the original results, this study (known as the PREVeNT trial) showed that preventative treatment delayed the start and lowered the number of infantile spasms in infants with TSC. This study enrolled 84 infants with TSC between 2016 and 2020, who had been diagnosed with TSC either through prenatal testing, physical examination, or genetic testing, but had yet to have any seizures. Infants who developed a specific EEG biomarker that indicates a risk of developing seizures were then placed in two groups, one receiving preventative vigabatrin treatment and one receiving a placebo. In this new study, the researchers found that infants who received vigabatrin still had drug-resistant epilepsy at 24 months, that focal seizures remained prominent in the infants, and there was no benefit in cognitive outcomes. The researchers state that these findings indicate the need to develop more effective therapies to treat cognitive and behavioral dysfunction in TSC.

Learn More

 

Advances in Cannabidiol (CBD) for Epilepsy Treatment and Prevention

A series of recently published articles details new breakthroughs in the field of medical cannabinoids for epilepsy and seizure disorders. Two publications review the effectiveness of CBD, a compound found in cannabis, in treating epilepsy and seizures. Another publication in the series describes the results of a meta-analysis (a type of study that reviews and combines the results of multiple other studies) to determine the overall effectiveness and safety of CBD treatment in children with genetic epilepsies such as Dravet syndrome, Lennox-Gastaut syndrome, and Tuberous Sclerosis Complex. This analysis revealed that CBD was effective in managing these genetic epilepsies, albeit with an increase in adverse events such as diarrhea, somnolence, sedation, and potential drug interactions. A separate publication showed potential effects of CBD as a prevention against seizures that are similar to those associated with temporal lobe epilepsy. Together, these publications provide information on the use of CBD in the treatment of epilepsy and open up the possibility of utilizing CBD in individuals at risk for developing epilepsy.

Learn More

Pioneering CBD for Epilepsy Treatment and Prevention

Article published by Vital Record

The emerging field of medical cannabinoids has experienced a breakthrough in epilepsy and seizure disorders. D. Samba Reddy, PhD, RPh, a Regents Professor in the Department of Neuroscience and Experimental Therapeutics at the Texas A&M University School of Medicine, is spearheading this advancement with a team of pharmacology researchers.

The team’s research on epilepsy has resulted in the publication of five key papers featured in the May 2023 issue of the journal Experimental Neurology.

“The medical cannabis research originated from the patient families and advocates in Colorado who have witnessed the positive effects of medical cannabis products,” said Reddy, who is a founding director of the Texas A&M Health Institute of Pharmacology and Neurotherapeutics.

Early small reports and surveys provided confirmation that CBD could potentially offer benefits for epilepsy. This prompted comprehensive research endeavors, which led to the U.S. Food and Drug Administration (FDA) approving CBD for treating childhood epilepsy in 2018. However, Reddy says the exact functions of endocannabinoids, the spectrum effects and the mechanisms through which CBD counteracts seizures still require further investigation.

Single Target, Multiple Possibilities: MicroRNA Holds Promise for Epilepsy Treatment 

Article published by News Medical Life Sciences

Featuring the work of former CURE Epilepsy grantee Dr. David Henshall

 

In a recent study published in the PNAS Journal, a group of researchers investigated the role of micro-ribonucleic acid (miRNA) miR-335-5p as a potential therapeutic target for epilepsy by regulating neuronal excitability through the modulation of voltage-gated sodium channels (VGSCs). 

 

Epilepsy affects millions of individuals worldwide, and current antiseizure medications (ASMs) target VGSCs. However, some forms of epilepsy, like Dravet syndrome, are treatment-resistant due to loss of VGSC function. To develop better therapies, researchers are exploring miRNAs that regulate gene expression. 

 

MiRNAs can control VGSC expression, making them attractive therapeutic targets. Triangulating miRNA datasets and studying miRNA alterations caused by effective ASMs could reveal potential therapeutic miRNAs for epilepsy. 

 

Cannabidiol (CBD), approved for treatment-resistant epilepsy, is an example of an effective ASM with an unknown mechanism of action, arising the need for further investigation. 

 

The study focused on investigating epilepsy using animal models. Animals were kept in controlled conditions with a 12-hour light-dark cycle, proper temperature, and humidity, with food and water freely available. 

 

The researchers used two epilepsy models: the PPS model of temporal lobe epilepsy (TLE) in rats and the pentylenetetrazol (PTZ) model in mice. For the perforant path stimulation (PPS) model, electrodes were implanted, and seizures were induced using paired-pulse stimuli. For the PTZ model, mice received a convulsant dose of PTZ to trigger seizures. 

 

Various treatments were administered to investigate their effects on epilepsy. They modulated miRNA through antisense oligonucleotide “antimir” injections and viral particles expressing specific miRNAs. Additionally, they administered CBD, a compound derived from cannabis, to study its potential effects on epilepsy. 

 

The researchers analyzed miRNA and mRNA expression in the brain tissues of the animals. They also identified miRNA-target interactions and performed pathway enrichment analyses to understand the molecular mechanisms involved in epilepsy. 

1 in 4 Patients with Epilepsy May Stop Epidiolex Due to Side Effects 

Article published by Dravet Syndrome News

Up to 1 in 4 people with hard-to-treat epilepsy, including those with Dravet syndrome, were found to stop taking Epidiolex (cannabidiol) shortly after starting treatment, primarily due to side effects or a lack of efficacy, according to a real-world study.

“Epidiolex is generally well-tolerated and the majority continued long-term treatment,” researchers wrote, but noted that the data suggest that most patients who discontinued the therapy did so “within the first several months of treatment.”

“Further studies designed to evaluate early identification and potential mitigation of adverse [side] effects … are warranted,” the team wrote, adding that more research is needed to confirm these findings.

The study, “Real-world, long-term evaluation of the tolerability and therapy retention of Epidiolex (cannabidiol) in patients with refractory epilepsy,” was published in the journal Epilepsy & Behavior.

In people with epilepsy, problems in the functioning of the brain cause bursts of uncontrolled electrical activity called seizures. These events can lead to a wide range of mild to severe symptoms that in Dravet patients may present as developmental and cognitive delays, movement problems, and difficulties speaking and sleeping.

Previous trial data suggested Epidiolex can cause several potential therapy-limiting adverse effects or side effects, such as diarrhea, liver enzyme increases (a sign of liver damage), decreased appetite, somnolence or sleepiness, and sleep problems. The results also indicated that treatment interactions with certain medications may be therapy-limiting for some patients.

Now, a team of researchers at the University of Wisconsin-Madison, in the U.S., evaluated the long-term effectiveness of Epidiolex. The focus was on a combination of efficacy and tolerability in people with refractory epilepsy in a real-world setting.

The study included 108 patients seen at the researchers’ center and who took Epidiolex for at least two weeks between December 2018 and December 2020.

CBD Use-Related Adverse Events Twice As Common in Patients With Epilepsy 

Article published by Neurology Advisor

Cannabidiol (CBD) use among patients with epilepsy is associated with an elevated risk for adverse events (AEs), including somnolence, decreased appetite, and pyrexia, according to findings from a systematic review and meta-analysis published in JAMA Open Network.

CBD is among a number of naturally occurring compounds, which are termed cannabinoids and are produced by the cannabis plant. CBD has been approved by the US Food and Drug Administration and the European Medicines Agency as an additional treatment for severe types of epilepsy, including Lennox-Gastaut syndrome (LGS) and Dravet syndrome (DS).

For the study, researchers assessed the frequency of and risk for AEs related to CBD use among individuals with epilepsy. They searched databases, including PubMed, Scopus, Web of Science, and Google Scholar for articles that reported at least 1 AE after CBD use among patients with epilepsy from database inception up to August 4, 2022.

Future research needs to investigate the therapeutic effects of CBD and AEs in the presence of various dosages of other antiepileptic dugs in order to achieve a safe and effective dose for treatment-resistant patients with epilepsy.

CURE Epilepsy Update April 2023

Greetings Epilepsy Community,

I am excited to announce the 2022 research grantees for our Catalyst, Rare Epilepsy Partnership, and CURE Epilepsy awards in this month’s CURE Epilepsy Update. The selection of cutting-edge research projects is one of the most important charges of our organization. We are proud to announce seven additional grants, which support many areas of epilepsy research, from the natural history and genetics of rare SCN8A-related disorders to translational research on a drug that can treat refractory neonatal seizures. The three Catalyst, three Rare Epilepsy Partnership, and one additional CURE Epilepsy Award total $1.3 million in funding and bring our total funding to almost $2.5 million in the past 12 months.

Five of our latest grants are generously funded by an anonymous donor who is inspired by the life of Robert Withrow Wier, who was an ambitious community leader with an innovative mind and a generous heart. This philanthropy has been particularly instrumental in two of our newest grant mechanisms, the Catalyst and Rare Epilepsy Partnership awards. The Robert Withrow Wier Fund jumpstarted the first Catalyst Award in 2020 and, through a unique matching gift challenge, inspired both additional large and small gifts to propel this program forward. Additionally, the CURE Epilepsy contributions of all three 2022 inaugural Rare Epilepsy Partnership Awards, which allow for accelerated progress on research priorities in collaboration with smaller nonprofits focused on rare epilepsies, are sponsored by the Fund.

Learn more about our new grantees here and stay tuned for updates on research progress going forward.

CURE Epilepsy (and epilepsy research) wouldn’t be where it is today if it wasn’t for our donors who have helped to fund these critical grants. We are also indebted to all of our amazing volunteers who give their time and talents to help support our mission. In advance of Volunteer Appreciation Week this month, let me personally thank everyone in the community who has helped us during the past year. It takes a village to come together to help propel epilepsy research forward the way that we have, and I am grateful to each and every one of you!

With a commitment to inspire hope and deliver impact.


In this CURE Epilepsy Update, please find information on:

Tickets Available for Our 25th Anniversary Gala in Chicago

Get your tickets today for our 25th Anniversary Gala in Chicago to be held on Saturday, May 6 at the Sheraton Grand Chicago Riverwalk. Join us in celebrating 25 years of inspiring hope and delivering impact and help us raise money to continue funding innovative epilepsy research.

 

 

 

Get Tickets

CURE Epilepsy Discovery: CURE Epilepsy Grantee Discovers Specific Alterations in the Inhibitory Neurotransmitter System in Infantile Spasms (IS)

One of CURE Epilepsy’s Infantile Spasms (IS) Initiative’s grantees, Dr. Chris Dulla, developed a mouse model that simulates the neuronal excitation and inhibition relevant to IS. Animal models are incredibly useful to understanding the biological mechanisms underlying IS, and by better understanding the interplay between neural excitation and inhibition in IS, there is hope that we can develop targeted therapies.

 

 

 

Read Discovery

Register for Our Online Forum: Navigating Prescription Medication Access and Patient Support Programs

Navigating access to prescription medications and overcoming the financial barriers can be incredibly complex and frustrating. Join us for an informative virtual forum about the challenges to accessing prescription medications and cost-saving strategies.

 

 

 

 

Register

Save the Date for Our Newest Treatment Talk: Treatment of Focal Epilepsy: Advancement Toward Medical Remission

Join CURE Epilepsy for our next Treatment Talk, a social-media broadcast that will be released Thursday, April 27 at 12pm CT on CURE Epilepsy’s YouTube channel. This talk will discuss focal epilepsy and the most recent treatments to help patients achieve medical remission. The talk features Dr. Michael Smith, Senior Attending Neurologist and Director of the Rush Epilepsy Center in Chicago and Sarah Carlson, a patient of Dr. Smith’s who battled epilepsy and its corresponding stigma for many years before achieving seizure freedom. Viewers will learn about focal epilepsy, how a new treatment (cenobamate), can offer patients the hope of medical remission, and the benefits and risks identified in recent clinical trials of cenobamate.

This talk is made possible through the generous support of SK Life Science.

Check Our YouTube Thursday, April 27 at 12pm CT

Watch Our Webinar: The Role of Medicinal Cannabis and Cannabidiol in the Treatment of Epilepsy

Did you miss our March webinar, The Role of Medicinal Cannabis and Cannabidiol in the Treatment of Epilepsy? Don’t worry, you can watch the recording or read the transcript on our website! This webinar reviews the basics of cannabis biology and the differences between cannabis strains, as well as explain the medical uses of medical marijuana and the recent approval of CBD to treat specific types of epilepsy. Thank you to Jazz Pharmaceuticals for their generous support of this webinar.

 

 

Watch

Siblings Day on April 10

 

Yesterday was Siblings Day, a day to recognize the amazing bond between siblings. When a child has epilepsy, it affects the entire family including the child’s siblings. Visit our Siblings Day event page to see Seizing Life episodes with siblings of individuals with epilepsy (including CURE Epilepsy Board Members Marilynn Gardner and Michael Axelrod) and a webinar on the impact seizures can have on the entire family.

 

Learn More

 

What’s New from the Seizing Life® Podcast

From Desperation to Hope: The Founding and Future of CURE Epilepsy featuring Susan Axelrod and Barbara Kelly

 

In 1998, Citizens United for Research in Epilepsy (CURE; the organization now known as CURE Epilepsy) was founded by parents of children with epilepsy who could no longer live with the status quo of epilepsy care. Desperate to help not only their own children, but also to create a better future for others living with epilepsy, these early advocates for epilepsy research changed the focus from “living well” with epilepsy to actively finding a cure for it. Susan Axelrod and Barbara Kelly were both there in the early years of CURE, gathering around a kitchen table to sow the seeds for the fledgling organization.

As CURE Epilepsy celebrates its 25th anniversary, Susan and Barbara join us to discuss the early years of CURE, their initial inspiration and vision for the organization, its impact on epilepsy research, and their hopes for the future of epilepsy treatments and cures.

Watch or Listen

 

 

The Crucial Role of Nurses in Epilepsy Care

 

Lucretia Long, an Advanced Practice Registered Nurse (APRN) and a Certified Nurse Practitioner (CNP), explains the training, duties, and responsibilities of an Advanced Practice Provider and discusses the vital role they play in filling gaps within epilepsy care caused by factors such as physician time limitations and the decline in medical school applicants.

 

 

Watch or Listen

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

The CURE Epilepsy Store

 

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

Shop

 

 

 

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 Jack’s Story

 

Highly Purified Cannabidiol Improves Stability and Postural Tone in Adult Patients with Lennox-Gastaut Syndrome: a Case Series

Abstract found on PubMed

Lennox-Gastaut Syndrome (LGS) is a severe developmental epileptic encephalopathy associated with numerous neurological signs and symptoms. Altered postural tone and the need for a caregiver-assisted wheelchair are features characterizing patients with LGS.  Highly purified cannabidiol (CBD) is a novel antiseizure medication recommended for seizure treatment, in combination with clobazam, in patients with LGS. Adding CBD to the previous antiseizure medication treatment helps reduce seizure frequency, specifically drop seizures, in patients with LGS in both clinical trials and real-world studies. However, no data about drug effects on postural tone, motor activity, gait and stability are available. In this case series, three adult patients diagnosed with LGS were treated with CBD as an add-on. During the follow-up, a slight improvement in seizure frequency was observed. Unexpectedly, an amelioration in postural tone and stability, measured using the validated Gross Motor Function Classification System, was also detected. Our case series suggests that CBD may help manage patients with LGS regarding seizure control and improve other aspects of the clinical spectrum of the disease, such as postural tone and stability. The mechanisms at the basis of this improvement may be related, other than seizure reduction, to the drug’s effect on the brain locomotor centers, as demonstrated in animal model studies.

CURE Epilepsy Update March 2023

Greetings Epilepsy Community,

As CURE Epilepsy continues to celebrate our 25th anniversary, I’m reminded again of how far we have come as a community, how we have advanced our understanding of the brain, and how much closer we are to cures. This anniversary has given us a wonderful opportunity to look back on our accomplishments over the years and share with you the impact that your support and donations have made. We will continue to share stories of impact with you in our monthly Discovery emails, in our webinars, and on social media.

If you will indulge me for a moment, I would like to call out the amazing team at CURE Epilepsy that drives this impact on behalf of our community to get us to a world without seizures. By the time you read this, Employee Appreciation Day on March 3rd will have passed, but I have the privilege of working with the most amazing, dedicated team of scientists, fundraisers, communications professionals, and support staff that any leader could ask for. The CURE Epilepsy staff is deeply committed to driving our mission, ensuring that we steward every dollar donated by the community. For those of you who have had the opportunity to interact with these wonderful people, I hope that you share my sentiment.

And if you haven’t had a chance to meet the team, we hope to see you at CURE Epilepsy or community events throughout the year, whether that be at our 25th Anniversary Gala in Chicago this May, at the Purple Day® Expo in Florida later this month, or at one of the many CURE Epilepsy champion events held in your communities

With a commitment to inspire hope and deliver impact.


In this CURE Epilepsy Update, please find information on:

Tickets Now Available for our 25th Anniversary Gala in Chicago

Get your tickets today for our 25th Anniversary Gala in Chicago to be held on Saturday, May 6 at the Sheraton Grand Chicago Riverwalk. Join us in celebrating 25 years of inspiring hope and delivering impact and help us raise money to continue funding innovative epilepsy research.

 

 

 

Get Tickets

Take Our Important Community Survey Before it Closes

As we celebrate our 25th anniversary this year, we are looking ahead to continued progress in finding cures for epilepsy. To make sure we are meeting your needs at this organizational milestone, we are conducting a community survey to inform our 5-year strategic planning process. We want to better understand your interests and needs, our organizational strengths and weaknesses, and how we can better serve and communicate with the broader epilepsy community.

The deadline to submit your feedback is today at 11:59pm CST. We appreciate you sharing your thoughts and helping ensure that CURE Epilepsy incorporates feedback from individuals living with epilepsy, their loved ones, caregivers, epilepsy researchers, and clinicians in the community. If you have any difficulties accessing or completing the survey, please email dana.vielmetti@cureepilepsy.org.

 

Take Survey Now

CURE Epilepsy Discovery: Implantable Devices Represent a Novel Way to Detect and Treat Epilepsy

Implantable epilepsy devices offer novel avenues to detect and treat seizures by recording seizure activity from neurons (brain cells) in high resolution and stimulating these neurons in a way that halts seizures. In this latest CURE Epilepsy Discovery, we highlight Brian Litt at the University of Pennsylvania who was funded by CURE Epilepsy in 2011, and whose work has led to the development of electrodes and technology that offer incredible precision in recording from and stimulating neurons.

Read Discovery

 

Paws for a Cause Awareness Event

Join Miami University’s PAWS for a Cause student organization for a hybrid (live + virtual), educational event featuring people living with epilepsy and family members sharing their experiences with service dogs. CURE Epilepsy’s CEO, Beth Lewin Dean, will also speak briefly about epilepsy and our organization.

 

Learn More

 

Watch Our Webinar: Cutting-Edge Technologies for Treating Nano-Rare Epilepsies

Did you miss our January webinar? Don’t worry, you can now watch the recording or read the transcript on our website! This webinar discusses the use of individualized antisense oligonucleotide (ASO) treatments for patients with nano-rare epilepsies. ASOs are short strands of modified deoxyribonucleic acids (DNA) that can be developed rapidly and inexpensively and can specifically target and potentially halt the development of disease-causing proteins, thus attempting to change the course of the disease.

 

Watch

Register for Our Upcoming Webinar: The Role of Medicinal Cannabis and Cannabidiol in the Treatment of Epilepsy

Our next webinar will take place on Wednesday, March 29 at 2 pm ET and will review the basics of cannabis biology and the differences between cannabis strains, as well as explain the medical uses of medical marijuana and the recent approval of CBD to treat specific types of epilepsy. Thank you to Jazz Pharmaceuticals for their generous support of this webinar. Stay tuned for more information.

 

Register

Fox 11 Los Angeles Speaks with CURE Epilepsy’s Chief Scientific Officer, Dr. Laura Lubbers

 

CURE Epilepsy’s Chief Scientific Officer, Dr. Laura Lubbers, spoke with Fox 11 Los Angeles last week on their segment aimed at raising awareness of epilepsy, Sudden Unexpected Death in Epilepsy (SUDEP), and infantile spasms. Additional guests on the segment include CURE Epilepsy community member Francesca Calloway, mother of a child with epilepsy, and an Associate Clinical Professor of Pediatrics at UCLA, Dr. Shaun Hussain.

 

Watch

 

Visit CURE Epilepsy at the 4th Annual Purple Day® for Epilepsy Awareness Around the World Expo

 

The Purple Day® for Epilepsy Awareness Around the World Expo is taking place Saturday, March 25, 2023, from 8:15 am-5 pm ET at Disney’s Contemporary Resort in Florida. Programming is specifically designed for patients and caregivers living with epilepsy as a shared opportunity to meet, engage, and be inspired to increase epilepsy awareness in their own community. In addition, patients and caregivers can explore the expo and learn more about the services and support available to them. CURE Epilepsy will present the Purple Day® Talk session “CURE Epilepsy’s Research & Response to the Rare Epilepsy Community” during the expo. Be sure to stop by our booth and say hi!

 

Learn More

 

Mind Your Brain Conference at Penn Medicine

 

Register today for The Mind Your Brain conference (which can be attended in person or virtually). This conference is focused on Traumatic Brain Injury (TBI) survivors, families and friends and is designed to share research, insights, therapies and other useful information with attendees, and also provide a forum for attendees to interact and connect with others affected by a brain injury.

 

Register

 

What’s New from the Seizing Life® Podcast

After Decades of Seizures, an Epilepsy Diagnosis Begins to Provide Answers

 

Carmen Zannier shares her 35-year epilepsy journey, discusses her recent decision to go public with her diagnosis, and explains how her passion for mountain climbing has led her to raising funds for epilepsy research.

 

Watch or Listen

 

 

Epilepsy Can’t Stop Young Girl’s Competitive Spirit

 

When it became clear that Christiane needed special attention and considerations in her training program, her father decided to become her coach. Despite experiencing seizures before races, Christiane has continued to compete at the highest level, making it to the final round of the 2021 Junior Olympics in the 100-meter dash. Even as they struggle to control Christiane’s seizures, her parents continue to support and encourage Christiane’s passion for running, and Christiane’s competitive spirit remains intact as she looks forward to the next Junior Olympic trials.

Watch or Listen

 

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

The CURE Epilepsy Store

 

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

 

 

 

 

Shop

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

  • January 1 – December 31, 2023 – CURE Epilepsy’s 25th Anniversary
  • March 25 – Purple Day® Expo at Disney World
  • March 26 – Purple Day®
  • 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 Michael’s Story

 

Study Reveals How Cannabidiol Counters Epileptic Seizures

Article published by LYU Langone Health

A study reveals a previously unknown way in which cannabidiol (CBD), a substance found in cannabis, reduces seizures in many treatment-resistant forms of pediatric epilepsy.

Led by researchers at NYU Grossman School of Medicine, the new study found that CBD blocked signals carried by a molecule called lysophosphatidylinositol (LPI). Found in brain cells called neurons, LPI is thought to amplify nerve signals as part of normal function, but can be hijacked by disease to promote seizures.

Published online February 13 in Neuron, the work confirmed a previous finding that CBD blocks the ability of LPI to amplify nerve signals in a brain region called the hippocampus. The current findings argue for the first time that LPI also weakens signals that counter seizures, further explaining the value of CBD treatment.

“Our results deepen the field’s understanding of a central seizure-inducing mechanism, with many implications for the pursuit of new treatment approaches,” says corresponding author Richard W. Tsien, PhD, chair of the Department of Physiology and Neuroscience at NYU Langone Health.

“The study also clarified, not just how CBD counters seizures, but more broadly how circuits are balanced in the brain,” adds Dr. Tsien, also director of NYU Langone’s Neuroscience Institute. “Related imbalances are present in autism and schizophrenia, so the paper may have a broader impact.”

Long-Term Efficacy and Safety of Cannabidiol (Epidiolex®) in Patients with Treatment-Resistant Epilepsies: 4-Year Results from the Expanded Access Program

Abstract found on PubMed

Objective: Cannabidiol (CBD) expanded access program (EAP), initiated in 2014, provided add-on CBD to patients with treatment-resistant epilepsy (TRE) at 35 US epilepsy centers. Prior publications reported results through December 2016; herein, we present efficacy and safety results through January 2019.

Methods: Patients received plant-derived highly purified CBD (Epidiolex®; 100 mg/mL oral solution), increasing from 2-10 mg/kg/d to tolerance or maximum 25-50 mg/kg/d dose, depending on the study site. Efficacy endpoints included percentage change from baseline in median monthly convulsive and total seizure frequency and ?50%, ?75%, and 100% responder rates across 12-week visit windows for up to 192 weeks. Adverse events (AEs) were documented at each visit.

Results: Of 892 patients in the safety analysis set, 322 (36%) withdrew; lack of efficacy (19%) and AEs (7%) were the most commonly reported primary reasons for withdrawal. Median (range) age was 11.8 years (0-74.5), and patients were taking a median (range) 3 (0-10) antiseizure medications (ASMs) at baseline; most common ASMs were clobazam (47%), levetiracetam (34%), and valproate (28%). Median top CBD dose was 25 mg/kg/d; median exposure duration was 694 days. Median percentage reduction from baseline ranged from 50%-67% for convulsive seizures and 46%-66% for total seizures. Convulsive seizure responder rates (?50%, ?75%, and 100% reduction) ranged from 51%-59%, 33%-42%, and 11%-17% of patients across visit windows, respectively. AEs were reported in 88% of patients and serious AEs in 41%; 8% withdrew because of an AE. There were 20 deaths during the study deemed unrelated to treatment by the investigator. Most common AEs (?20% of patients) were diarrhea (33%), seizure (24%), and somnolence (23%).

Significance: Add-on CBD was associated with sustained seizure reduction up to 192 weeks with an acceptable safety profile and can be used for long-term treatment of treatment-resistant epilepsies.