Key takeaways:

• Greg Grunberg has been an epilepsy caregiver for 23 years following his son Jake’s diagnosis.
• Grunberg highlights caregiver work in a video series.
• Physicians should be patient with families and ready to listen.

As an actor, producer and comic book author, Greg Grunberg has led a busy life. But no matter what is happening around him, he always has time for a phone call from his son, Jake.

Jake, the oldest of three, started having seizures at age 7 years, 23 years ago. It came as a surprise to Grunberg, who said his family has no history of epilepsy.

“We didn’t know anything about it,” Grunberg told Healio. “He would have staring spells, and that developed into every kind of seizure you can imagine.”

Jake wound up having a difficult case to treat, Grunberg said. Diagnosed with a form of drug resistant epilepsy, he required two brain surgeries.

Today, at age 30 years, Jake lives well with his treatments, Grunberg said. Always an athletic child, he has earned a second-degree black belt in Taekwondo, which he also teaches. He can take care of himself and has a girlfriend, Grunberg said.

Today, whenever Grunberg sees an incoming call from Jake, he stops whatever he’s doing and takes it.

“Anytime my phone rings, as any caregiver knows, you answer that,” Grunberg said. “Because this is an earthquake that can strike at any time.”

Building a community

Following his son’s diagnosis, Grunberg, known for his roles in Star Wars and Heroes, began to take on a bigger role as an advocate in the epilepsy community, where he said caregivers and patients needed a voice.

Approximately 3.13 million people in the U.S. have active epilepsy, including around 456,000 children age 17 years and younger, according to the CDC. The cause of the disease is often unknown, but it can result from stroke, brain tumors, brain injury or serious illness.

Grunberg’s advocacy has led him down an impactful path, one that has included serving as chair of the first National Walk for Epilepsy in 2007; launching the “Talk About It!” podcast, which now has 400,000 subscribers; and giving the keynote speech at the 2026 Tuberous Sclerosis Complex (TSC) World Conference, which took place July 30 to Aug. 1.

Grunberg said his experiences have pushed him to spend a lot of time thinking about how healthcare professionals can best communicate with patients and families, and vice versa.

He said his main message to physicians is to be patient with people, listen to everything and take them seriously when they discuss their issues.

“Patients are advocating for themselves, and no one knows their body better than them,” he said. “Everybody wants the same thing, and you have 5 minutes in a room to tell your story and figure it out. And it’s hard. It’s really hard. So hopefully we have longer form conversations.”

Being compassionate and having a compassionate office staff can also make a big difference for patients who are dealing with a neurological condition and may be feeling overwhelmed with information, Grunberg said.

“Have somebody in your office that can really help with that and give the information to the patient for the resources that are out there,” he said.

However, Grunberg said the understanding needs to go both ways, with families realizing how busy physicians are and being prepared.

“Be prepared in those doctor’s appointments and share everything,” he said. “Organize your thoughts. Have it all written down before you go in so that you can use your time wisely, which is really, really important.”

Caring for caregivers

Alongside his efforts to raise awareness about patient needs, Grunberg said one of the most important roles he fulfills is that of a listening ear or an understanding friend for others. Small actions can make a big difference, he said.

At conferences, Grunberg said he often participates in gatherings of caregivers who are fathers. The experience of “talking real talk” with other men who have similar experiences and challenges can be cathartic, he said.

“There’s no mention of medicine,” he said. “It’s just, ‘What is your life like? How are you dealing with this?’”

As part of a video series with Jazz Pharmaceuticals, Grunberg said he goes to different parts of the U.S. to meet with caretakers. Something as simple as chatting over coffee can make a big difference in their mental fortitude, he said.

“It’s like these people don’t have time to take care of themselves at all,” he said. “They’re completely immersed in the care for their loved ones.”

One of the biggest differences a caregiver can make in the lives of a patient with epilepsy is simply attending their appointments with them, which Grunberg said can give them a feeling of support, help them remember doctor instructions and provide another person to help communicate needs and concerns to doctors with busy schedules.

“Go together because they’re not as emotional as you are,” Grunberg said. “They’re not going to forget things, and they’ll help you.”

Grunberg is quick to point out that his advocacy work has greatly benefited him as well. He jokes that he “selfishly” continues to take on lead roles in gatherings and group sessions.

“I’ve learned so much from talking to other caregivers and talking to other people,” he said. “There’s just a shorthand that you have with other caregivers. You don’t have to explain your story.”

For caregivers, Grunberg said his message is to take care of themselves, avoid getting weighed down by the demands and focus on the human connection.

“Epilepsy can kill you and does kill people,” he said. “And so, we deal with all of it and the emotion of it, but we humanize it. I just encourage people to reach out. There are people that are going to read this, and they’re going to feel very alone, as we did. Just know that you’re anything but alone.”

Moving forward, Grunberg said he plans to keep up the advocacy work while bringing the epilepsy community together, whether through speaking engagements, his podcast or lifting up another caregiver in need.

“This is a group that I never wanted to join, but I could not be happier to be here,” he told Healio.

For more information:

Greg Grunberg can be reached at neurology@healio.com.