CURE Epilepsy

05/29/2026

CW: SUDEP

Carina shares her son's story with the hope that it will emphasize just how critical it is to keep research going until we've created a seizure-free world. In her own words:

"My story may not be one that bettered my life, but maybe it will show need for research to cure epilepsy."

"My son was 14 years old when his seizures started. They were mild at first, but over the years (despite trying many different medications) they became worse. I believe he was drug resistant and I tried suggesting other options, but doctors just kept trying new medications. He was on 4 different medications to help stop his seizure, but nothing worked."

"On November 6, 2023, he was home and in his room sleeping. Or so I thought. He had a seizure and no one heard him or knew. I had checked on him many times and just thought he was sleeping. I thought I heard him, but found him lifeless. He had a seizure and suffocated."

"I lost my son to epilepsy. This is why more research is important — so no one else has to lose a loved one ever again. CURE Epilepsy needs all the help and support they deserve. I hope that anyone living with epilepsy is able to be cured before it’s to late."

05/27/2026

Announcing our latest grant! The new SUDEP Clinical Biomarker Team Science Award provides $750,000 in funding to three multidisciplinary teams across the world.

Dr. Shobi Sivathamboo is a neuroscientist, Dr. Andrew Landstrom is a pediatric cardiologist, and Dr. Satya Sahoo is a data scientist. Together, they will explore how to more effectively identify who is at high risk of SUDEP and ultimately prevent this tragedy.

The award is made possible through a lead gift from the Epilepsy Foundation of America as well as families who’ve experienced SUDEP.

05/21/2026

This month's Epilepsy Research News round-up included four unique articles:

🧠 Epilepsy Gene Implicated in Severe Migraine Disorder: https://bit.ly/4uVXMDI

🧠 Treatment of Rare Childhood Epilepsy Could Begin Before Birth: https://bit.ly/42ItiJi

🧠 The Brain Has a Warning System for Its Own Electrical Misfires, and We Can Now Read It: https://bit.ly/4uXctX7

🧠 Inflammatory Cytokine Signatures in Epilepsy: Distinguishing Drug-Resistant from Drug-Responsive Patients: https://bit.ly/43hICwG

Never miss an update! Subscribe for research news delivered right to your inbox: https://www.cureepilepsy.org/subscribe/

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

05/21/2026

Watch the Chicago Fire take on the Vancouver Whitecaps while supporting epilepsy research and raising awareness! A portion of ticket sales for the July 16 game will benefit CURE Epilepsy.

Plus, Broadway's Miguel Cervantes will be making a special appearance to sing the national anthem to kick off the game. 🎤 Get your tickets here: https://www.gofevo.com/event/CUREEpilepsy2026

05/21/2026

Have you heard of focused ultrasound? This therapy uses externally applied ultrasound waves focused through the skull to a specific area of the brain to produce therapeutic effects without incisions or radiation.

Last year, we partnered with the Focused Ultrasound Foundation for their first-of-its-kind workshop on treating epilepsy with this promising therapy. Our Chief Scientific Officer, Dr. Laura Lubbers, reflects on the 5 biggest takeaways in a recent blog post. Check it out here:

In November 2025, I had the privilege of joining more than 50 global experts in Charlottesville, Virginia, for a first-of-its-kind workshop hosted by the Focused Ultrasound Foundation in partnership with CURE Epilepsy. Our shared goal was both ambitious and urgent: to evaluate how focused ultrasou...

05/20/2026

Preparation can help you get the most out of appointments with your child’s (or your own) epileptologist or neurologist.

In our latest episode of Epilepsy Explained, Dr. Douglas Nordli shares straight-forward information about how to prepare for appointments to make them as effective as possible.

You don’t want to miss this episode. Check it out here: https://www.cureepilepsy.org/epilepsy-explained/epileptologist-visits-explained/

This Epilepsy Explained episode is generously supported by an independent educational grant from SK Life Science, Inc.. CURE Epilepsy is solely responsible for the selection of the presenter and the content.

05/18/2026

The PAME: Partners Against Mortality in Epilepsy Conference brings together epilepsy researchers, health care providers, nonprofit leaders, and people impacted by epilepsy, including bereaved families, to share knowledge and work together to prevent epilepsy mortality.

The PAME Conference will take place in Denver, CO, on December 3, 2026, with a dedicated family session on December 2.

Stay tuned for more details! We look forward to coming together for this important event.

05/15/2026

Thank you so much to University of Maryland Eastern Shore-School of Pharmacy staff and students for hosting the 13th Annual 5k Strides for Epilepsy Walk/Run this month. Over 60 people registered and this event raised over $4,400 — a single-year record! This CURE Epilepsy Champion event is our longest running and we are so honored to have their support every year. 💜

05/14/2026

Victoria's journey with epilepsy has been far from simple. Her mom says:

"Our daughter Victoria was diagnosed with epilepsy at just three years old. She is now 11 years old and has been dealing with intractable seizures for almost 8 years."

"Victoria has partial focal seizures. She has trialed over 10 different medications to try to get these seizures under control. First there was no known cause for her epilepsy. When she was six, we got a T7 MRi which showed cortical dysplasia in her left frontal lobe, which is the cause of her seizures."

"When multiple medications were not enough, we decided to proceed with VNS implant to try to help reduce the number of seizures. Sadly that still did not help. A year after VNS implant we moved forward with a very new and invasive surgery CSCS/DBS- Chronic Subthreshold Cortical Stimulation and Deep Brain stimulation. Victoria had 4 electrodes permanently placed in her brain, connected to a generator in her chest. With two stimulation devices implanted Victoria is STILL fighting daily seizures."

"This epilepsy journey has been anything but simple."

Share your epilepsy story: https://www.cureepilepsy.org/personal-stories/

05/13/2026

Chicago, there is something special coming your way. Get ready for an advanced screening of "Under the Lights" with filmmaker with epilepsy Miles Levin IN PERSON.

Featuring an all-star cast, Under the Lights stands to be a big moment for epilepsy awareness. Join us on June 23 at 6pm at the Davis Theater for an evening of awareness, connection, and a groundbreaking moment for our Chicago epilepsy community.

Thanks to generous support from UCB USA, Chicago-based epilepsy organizations, including the American Epilepsy Society, CURE Epilepsy, The Danny Did Foundation, and Epilepsy Foundation of Greater Chicago, have come together to bring Under the Lights to Chicago. This powerful collaboration brings our community together to spark conversation, deepen understanding, and strengthen support for those living with epilepsy.

05/10/2026

If there's one thing you can count on, it's that epilepsy moms will always advocate for their children to give them a thriving future. This Mother's Day, our Associate Director of Research Initiatives, Dr. Elaine O’Loughlin, shares her sweet daughter Fiadh's story, reflecting on how progress shaped their journey with epilepsy.

"Fiadh was diagnosed with infantile spasms and focal seizures in 2021. We did everything we could to fight back, but her epilepsy became incredibly drug-resistant."

"She failed more than twelve medications."

"Seizure control, let alone seizure freedom, was out of reach. We faced repeated hospital admissions, emergency interventions, rescue medications, and the heartbreak of watching her seizures steal pieces of her development and her joy."

"As a neuroscientist, I understood the science. But as a mum, I was simply trying to save my child. Watching your little one endure uncontrolled daily seizures is a pain no parent should face. You want to fix it. You want answers. Your support helps make those answers possible."

"Because Fiadh’s epilepsy was focal, she was a candidate for surgery, yet it was far from a simple path. Thanks to advancements in imaging, invasive monitoring like sEEG, and remarkable collaboration across hospitals, Fiadh underwent a multi-stage surgical approach in 2023."

"Today, Fiadh is celebrating more than two years without a seizure."

"We are endlessly grateful, but I also know many families are still waiting for treatments that work, for hope they can hold onto."

"This Mother's Day, make a gift and stand with the families who are still waiting for a breakthrough. Your generosity fuels the research that give families like ours hope – and our daughter her life back."

Give here: https://bit.ly/4ewAAac