CURE Epilepsy

04/23/2026

**There is still time to unlock a matched gift**

Some challenges aren’t visible at first glance. Silas is smiling, playing, living his life. Yet epilepsy doesn’t disappear just because it’s invisible.

It’s in the missed medication that can trigger panic.
The phone calls from school that stop your heart.
The constant “what if” running quietly in the background.

Together, we can end "what if" by finding cures for epilepsy. When you give today, your gift today will help unlock a $25,000 generous match from Jonathan and Julia Tuteur – doubling the impact for epilepsy research.

We’re inviting everyone who hasn’t yet made a gift to take that first step and become a donor. Our goal is to welcome at least 75 new supporters to CURE Epilepsy, but every gift helps build momentum towards a cure. Will you make a gift to light the way? https://bit.ly/484Fwz4

04/23/2026

Kris and Kellie UNITE to CURE Epilepsy for Silas. In their own words....

"It started with a moment we’ll never forget. Sitting in a hospital room after the birth of our son, Silas, we were told he had Sturge Weber syndrome, a rare condition that causes epilepsy. This moment changed everything."

"That same day, we learned researchers had just discovered the gene behind his condition. In the middle of fear, scientific research provided something unexpected: hope, as well as a reason to act.
We weren’t going to just wait. We were going to do something. And today, through UNITE, you can too."

"We started small. We shared our story with friends and family and asked a few people to give to CURE Epilepsy in honor of Silas to support epilepsy research."

"That first endeavor resulted in $9,000! More importantly, it showed us that when you invite people in, they want to help. That’s where the ripple effect began."

"So we kept going."

"A karaoke night became a yearly tradition.
A single triathlon race became a team.
And with every step, more people joined us, united by a belief in the power of research to change lives."

"Last year, 38 people came together for the Chicago triathlon and raised $100,000 for research, all because one story invited them in."

"Today, you can help that ripple effect grow even faster – every gift you make will help unlock a $25,000 generous match from Jonathan and Julia Tuteur, doubling your impact."

"This UNITE, we’re inviting everyone who hasn’t yet made a gift to take that first step and become a donor. Our goal is to welcome at least 75 new supporters, but every gift helps build momentum towards a cure. Will you make your gift and be part of the movement that moves research closer to a cure?"

Make your matched gift here: https://bit.ly/4twlVAF

04/20/2026

See if you qualify here: https://survey.cmix.com/608BE45B/7E305C4Q/en-US

For any questions, contact: FocalSeizureStudy@iqvia.com

Disclaimer: Paid placement by IQVIA. Does not constitute an endorsement by or affiliation with CURE Epilepsy.

04/17/2026

CW: SUDEP 💜 Michaela's story, as told by her mother, Heather:

"My daughter, Michaela, had her first seizure January 20, 2011. She was diagnosed with Juvenile Myoclonic Epilepsy in February 2011 after a EEG that shows irregularities. She immediately started on medication. She was 11 (almost 12). Days turned into weeks turned into months turned into years – 15 of them, every one riddled with hundreds of tonic clonic, absence, and myoclonic seizures. It was relentless. In 15 years, she only had 1 year seizure free. They labeled her drug-resistant epilepsy, intractable. In 2018 she had the VNS implanted and we saw some improvement, but still never seizure free for longer than a week."

"In 2021, Michaela found out she was pregnant. She had always wanted to be a mom, but, as we all know now, pregnancy can be dangerous in people with epilepsy. She and her partner decided to go all-in, and they had their sweet baby in July 2022. Delivery was traumatic. Michaela seized for hours. She had an out-of-body, near death experience, but eventually she delivered a beautiful, healthy little girl."

"The next 2 years would be riddled with physical declines, cluster seizures, hospital visits, medicine changes, and VNS updates. Her seizures continued to get worse. In 2024, Michaela had the RNS implanted. After her brain surgery, we saw a stabilization in her seizures. Not as many, fewer clusters, but when she had then they were violent, and lasting longer by the day."

"On January 27, 2026, Michaela had a nocturnal seizure at approximately 2:30 am and succumbed to her seizures at 2:47 am. She was 27. SUDEP took our baby, and we were stunned, heartbroken. Over the years, Michaela worked tirelessly to educate friends and loved ones and even strangers about epilepsy first aid, triggers, tried to make talking about epilepsy normal, reducing the stigma around seizures, and just altogether being an advocate. I was her partner in that."

"This year, we are going hard to spread awareness, advocate, teach, and help others with epilepsy find resources and hope. Where we live, there isn’t a lot of resources for patients or caregivers. I plan on changing that in honor of our sweet girl. We hope to change the perception of seizures. All of this, so that when her daughter grows up, we can show her how her Mommy helped change the conversation surrounding epilepsy. Michaela’s battle may be over, but ours continues in her honor."

Tell your epilepsy story here: https://bit.ly/4sahc5S

04/16/2026

What if one small act could turn into something far bigger than you ever imagined? On April 23, you’ll have a chance to find out.

UNITE to CURE Epilepsy is a day for the community to come together with one shared purpose: to drive research forward and accelerate the search for a cure.

Next week, you’ll meet the Sadens family and learn how a pivotal moment in their lives led to a movement to push epilepsy research forward, and how you can be a part of it, too.

Thanks to the generosity of Jonathan and Julia Tuteur, your gift will help unlock a $25,000 match, doubling the impact of every dollar.

For now, mark your calendar for April 23 or make an early gift here: https://bit.ly/48vE74I

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.