CURE Epilepsy

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."

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:

Focused Ultrasound for Epilepsy: From Promise to Path Forward - Focused Ultrasound Foundation 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...

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/