“It’s like falling and never hitting the ground.”
That’s how one woman described living with epilepsy.
Like many diseases, the 50 million people worldwide living with epilepsy each experience the disease a little differently. Some might have a seizure once every few years, while others might have multiple seizures a day. For some, those seizures may be hardly noticeable, while for others they are prolonged and frightening.
But what each of those with epilepsy share is the sudden surge in electrical activity in the brain that triggers a seizure. These epileptic seizures happen randomly. That in and of itself is unsettling. As one woman in her late 30s said in a Facebook epilepsy group, the arbitrary nature of epilepsy is life-altering.
“(It’s) exhausting and scary, the fact of never knowing when or where it’ll happen.”
Epilepsy awareness
While the seizures might lead to injuries, for some it’s all the issues surrounding the unknown nature of the seizures that make it difficult.
“It’s not the seizures,” one man with the condition said. “It’s the effects epilepsy leaves: memory loss, job loss, can’t drive, etc., etc., blah, blah.”
This Epilepsy Awareness Month, we’re exploring what epilepsy is, why existing treatments don’t work for everyone, and how California Institute for Regenerative Medicine (CIRM)-supported research could expand treatment options.
CIRM funded epilepsy research from early discovery work at UC San Francisco through clinical trials. One of the early programs CIRM supported eventually led to the spin-out company Neurona Therapeutics and an investigational therapy known as NRTX-1001.
This new targeted cell therapy for people with drug-resistant temporal lobe epilepsy is now in clinical trials; so far, the results have been encouraging. The larger pharmaceutical company UCB acquired Neurona in April of 2026. The company says it plans to move soon to a Phase III clinical trial for the therapy, which is on regulatory fast track. The company uses stem cell-derived neurons designed to quiet the overactive brain activity that triggers seizures. This offers more invasive approaches that involve either removing or destroying brain tissue. The hope is that adding these cells can help control seizures.
Life altering
Epilepsy is a neurological disorder that causes recurring seizures. It affects children and adults and can have many causes, including genetic conditions, brain injuries, and infections. In about half of cases worldwide, however, the cause is unknown.
While anti-seizure medications help many people control their seizures, roughly one-third continue to have seizures despite treatment, a condition known as drug-resistant epilepsy.
For some, surgery to remove the brain tissue where seizures begin, or laser interstitial thermal therapy to destroy that tissue with targeted heat, can offer better seizure control. But these procedures aren’t for everyone, and sometimes don’t work. Depending on the treatment and the brain region involved, risks can include changes in memory, language, mood, or vision.
Some effects may be temporary; others can be lasting.
These limitations are driving the search for additional treatments, like Neurona’s.
“People often misunderstand epilepsy as a nuisance managed by medication, rather than the severe, life-altering condition it is for many,” said Cory R. Nicholas, PhD, CEO and Neurona co-founder.
A big step forward for some
Epileptic seizures for some are mild. For some, that might mean a seizure is more like a glitch in their brain that causes them to stare blankly into space. However, others might experience much more dramatic physical seizures. A grand mal seizure causes a loss of consciousness and violent muscle contractions.
While some medications and interventions can help lessen the recurrence of epileptic seizures, those treatments don’t work for everyone, and for some, they become less effective over time. An estimated 600,000 people in the US have drug-resistant epilepsy. There is also no cure for epilepsy.
While the seizures in and of themselves might lead to injuries, for some it’s all the issues surrounding the unknown nature of the seizures that can be life-altering. It can become isolating.
“It’s not the seizures,” one man with the condition said. “It’s the effects epilepsy leaves — memory loss, job loss, can’t drive, etc etc blah blah.”
A big step forward for some
While some medications and interventions can help lessen the recurrence of epileptic seizures, those treatments don’t work for everyone. An estimated 600,000 people in the US have drug-resistant epilepsy.
Justin Graves, who we’ve written about on this blog, was one of those people for whom treatments did not work. Graves’s first epileptic seizure came in 2007. A scuba diving instructor, he found that the condition altered the course of his life. Despite treatment his condition worsened.
Graves became one of the first participants in the Neurona clinical trial in 2023 at a CIRM-funded Alpha Clinic at UC San Diego. Within a month, he noticed improvements, no longer experiencing grand mal seizures, although he still experiences smaller seizures a few times a month known as auras that might force him to stop what he’s doing for a few minutes.
But the reduction in seizure number and severity has already made a huge difference, he said.
“That’s just a huge step forward to me.”
If successful, Neurona’s approach to addressing drug-resistant epilepsy could also become a huge step forward in treating the condition. The approach uses stem-cell-derived neuronal cells that dampen the release of a neurotransmitter in the brain called GABA. This helps to calm the “brainstorm” of electrical activity that leads to seizures. As part of the therapy, researchers inject the cells into the seizure-affected brain area. Pre-clinical testing suggests a single dose of NRTX-1001 may suppress seizures for a long time, but a larger randomized trial is still needed to determine the efficacy of this approach.
Looking at the future
While current treatments — anti-seizure medication and surgery—can be highly effective, they do not work for everyone. Those treatments are disease-modifying but are not a cure, and neither is Neurona’s.
Other emerging approaches include gene therapies that would change the expression of genes associated with epilepsy. CIRM funded early research on these approaches, but they have not yet moved into the clinic. CIRM has also funded other approaches for epilepsy that are tied to genetic causes and research done by Yael Weiss at Mahzi Therapeutics and Joseph Gleeson at UC San Diego.
In general, epilepsy research is moving away from treating all seizures and all forms of the disease in the same way, but fundamental work is still being done to better understand the different forms of epilepsy. Some of the research funded by CIRM focuses on human neurons, induced pluripotent stem cells, and brain organoids to create models scientists can use to study epilepsy. These tools are valuable, but they cannot fully mimic the complexity of the human brain.
As scientists still hunt for a cure, they’re learning more and more about how epilepsy manifests itself differently in patients. Even troubling new data suggest that people with epilepsy are at a higher risk for developing dementia, which may reveal more about both conditions and offer new approaches to treating the condition.
Resources where you can learn more about epilepsy
National Institute of Neurological Disorders and Stroke
International League Against Epilepsy
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