CURE Epilepsy

04/15/2026

CURE Epilepsy Champions Alex Dashner really lived up to her name when she ran a half marathon in Bend, OR to raise funds for epilepsy research!

Alex ran to celebrate the life of her dear friend Ryan, who passed away from SUDEP. She set a new personal record, finishing in under two hours! 🏅

Her best friend was on the sidelines, cheering her on with a handmade “Run for Ryan” sign. 💜

"I felt his presence with me throughout the race and it felt like a good way to honor him," Alex told us.

Thank you for allowing us to be a part of your celebration of Ryan's life, Alex!

04/14/2026

Missed our Epilepsy Research News newsletter today? We've got you - today we shared:

🧠 Groundbreaking Research Reveals “Leaky” Brain Barrier as Driver of Chronic Brain Damage in Retired Combat and Collision Sports Athletes: https://bit.ly/4cBXjjH

🔎 Tiny Peptide Shows Promise in Slowing Epilepsy Progression: https://bit.ly/4sP2WA9

💡 Tau Pathology in Epilepsy: Emerging Mechanisms and Translational Opportunities: https://bit.ly/4t8mbpf

✏️ Epilepsy Disease Classification: A Community Effort to Enhance the Mondo Disease Ontology: https://www.cureepilepsy.org/news/epilepsy-disease-classification-a-community-effort-to-enhance-the-mondo-disease-ontology/

See all of our featured articles here: https://www.cureepilepsy.org/news/

Stay up to date with the latest developments across the epilepsy research community--from publications to news articles.

04/14/2026

Did you remember to take a look at your seizure action plan last month? Whether you’re updating a current plan or creating one from scratch, our Seizure Action Plan hub has plenty of resources and advice to point you in the right direction: https://bit.ly/4dOa7EF

This resource is made possible by support from Neurelis.

Epilepsy is an unpredictable condition. A seizure action plan can help prepare you for an emergency. Find out more about Seizure Action Plans

04/13/2026

ICYMI: The first webinar in our Pipeline of Progress series was all about epilepsy medications on the horizon. Dr. Nathan Fountain walked us through a detailed look at medications in phase III clinical trials and answers audience questions like:

🧠 Can neurologists tell whether you need potassium channel or sodium channel medications? And if so, how?

🧠 How are medications determined to be safe or not during pregnancy?

🧠 Does it matter where in the brain the seizures comes from in terms of the efficacy of these drugs, especially for focal seizure medications?

🧠 Is there anything in the pipeline for partial motor focal epilepsy caused by scar tissue as a result of traumatic brain injury?

Watch the recording here: https://www.cureepilepsy.org/webinars/pipeline-of-progress-epilepsy-medications-on-the-horizon/

This series is generously supported by independent educational grants from Lundbeck, Stoke Therapeutics, and Xenon Pharmaceutical.

An interactive review of some of the epilepsy medications in phase III clinical trial as of April 2026 with audience Q&A.

04/09/2026

Meet Alisza. She is 4 years old, has epilepsy, and wants to share her story:

"Hi, my name is Alisza. I am 4 years old and I have epilepsy. I also have a condition called ESES, which is rare."

"It all started after I turned 3 years old. My mom noticed some weird eye flickering once or twice a day. She thought she was crazy, then more started happening and someone else noticed. They took me to the ER, and doctors said they could not help. My mom was calling everywhere to try and figure out what it was. She called the pediatrician and he said he could do a checkup, yet still nothing."

"Weeks were passing. I started getting worse. I started having up to 200+ seizures a day. We were going to the emergency room almost every other day, but the hospitals we live by did not know much about what was going on with me. They recommended me to a Cooks Children’s neurologist nearby. Finally we found someone who knew more about what was happening to me. She diagnosed me with epilepsy and wanted me to go get tested for autism."

"My new doctor put me on medications, but they weren’t helping, so we kept trying different medications. Two months after being diagnosed, I started having different seizures. At this point I have eye flicking movements out of nowhere, seizures in my sleep where I turn blue, another kind of seizure where only the right side of my body is shaking and I get a paralyzed for a few hours after, 10+ minute tonic clonic seizures, absence seizures, and lastly head dropping with eye flickering."

"Our neurologist recommended us to Cook Children’s Hospital in Fort Worth, TX. I have tried every medicine and treatments, and I have failed every single one. I now have to wear a helmet everywhere I go and my speech is not the greatest. Recently the doctor said I’m out of options and they don’t know what or where the seizures are coming from. They want to do the VNS stimulator, but it is not a guaranteed it will work."

"Right now, I’m 4 years old and I’m tired. It would mean the whole world to me and my family for us to find a cure for me. I don’t want everyone to give up. If we can’t stop what’s going on in my brain, I will lose all my cognitive abilities. Please help me find a cure or other ways and opinions you think would help."

You can submit your epilepsy story here: https://bit.ly/41kwUR9

04/07/2026

Last call to register for the first webinar of our 2026 Pipeline of Progress series on epilepsy treatments and therapies! https://us02web.zoom.us/webinar/register/4617730737695/WN_zeGoNN4lRHO2hoKViIFaqA

The Pipeline of Progress series is powered by Lundbeck, Stoke Therapeutics, Xenon Pharmaceuticals.

Join us for the first event in our Pipeline of Progress series, created especially for people living with epilepsy and the loved ones who support them. This interactive webinar will help you understand what new treatments are on the horizon and what researchers are working on right now. Our speaker,...

04/03/2026

Have you contacted your representatives and senators to urge them to sign onto the National Plan for Epilepsy? Help us end this week of action strong! Head to epilepsy-national-plan.org to act now.

04/01/2026

Just when you thought it couldn't get any better - we've added THREE performers to CURE Epilepsy Takes Manhattan. This one‑night‑only musical experience features unforgettable performances to help fuel groundbreaking epilepsy research.

Three more original cast members from the Broadway show American Idiot will take the stage at what promises to be a fabulous reunion:
Andrew Call (Original cast of Groundhog Day)
Van Hughes (Original cast of Almost Famous)
Alysha Umphress (Scotland, PA)

They are joining...
Rebecca Naomi Jones (Hadestown)
Libby Winters (Almost Famous)
Ben Thompson (Waitress)
Brian Johnson(Original cast of Spring Awakening)
Miguel Cervantes (Hamilton)

Get your tickets to this one-of-a-kind show here: https://bit.ly/4bMK4fP

04/01/2026

What do you think about Dr. Weiner's philosophy of care? 🤔

On this month’s episode of Seizing Life, Kelly welcomes pediatric neurosurgeon Dr. Howard Weiner to the podcast for an engaging conversation about epilepsy neurosurgery.

Dr. Weiner provides insights and advice on a wide range of topics from the importance of the human touch in epilepsy care to preparing children and families for brain surgery to advances in surgical technology and infusing humanity, empathy, and compassion into medical training.

Check out the full show on your favorite podcast platform!

03/26/2026

At six‑and‑a‑half, Kora should be focused on crayons and playground games—not seizures that can interrupt her day without warning.

Some may remember Kora’s story from last Giving Tuesday. Today, as we wear purple, her family wanted to share that while Kora still has seizures, she remains a joyful, creative little girl who loves to draw and fill her home with color.

After her diagnosis at just one year old, Kora’s family turned fear into action, starting with a small cookie fundraiser to support epilepsy research. That hope still fuels progress today.

Every gift helps move research forward so children like Kora can have more seizure‑free days. 💜 Every child deserves a childhood without epilepsy getting in the way. Please consider giving today here: https://bit.ly/4ssrqQ4

03/25/2026

Newborns with hypoxic ischemic encephalopathy (HIE) face devastating seizures, and, unfortunately, many do not respond to available medications. Dr. Shilpa Kadam received a 2022 Robert Withrow Wier Catalyst Award to investigate a novel approach to treating HIE that targets the chloride co‑transporter KCC2. Now, four years later, she updates us on ongoing work at Axonis Therapeutics that may lead to a breakthrough in stopping seizures that are resistant to existing treatments, while also supporting healthy brain development. This exciting research not only brings hope for babies with HIE, but may also open the door to new treatments for refractory seizures across multiple neurological disorders.

03/24/2026

We can't wait to for the Purple Day Expo! In addition to stopping by the CURE Epilepsy booth, be sure to join our breakout session. 💜