Greg Grunberg is a Hero for Epilepsy

Filed under: Celeb Parents

Greg GrunbergGreg Grunberg plays a superhero on television -- specifically, a guy who can read minds and control people's thoughts. But the "Heroes" star says his son Jake is the real hero. Jake, now 13, was diagnosed with epilepsy at age seven. It started with what Grunberg describes as "staring spells," and got worse from there. "We were terrified," he told ParentDish. "As a parent you've got to run as fast as you can for as long as you can until you get it under control."

Grunberg, 42, and his wife, Elizabeth Dawn Wershow, started down a long road of doctors and medications only to find that Jake fell into the 20 - 25 percent of people with epilepsy who don't respond to conventional treatments. As he entered puberty, his seizures worsened, which terrified the family. Their worst fear was that Jake would suffer a head injury during a seizure. "Head injuries can be deadly," Grunberg says, the concern clear in his voice.

This year, though, Jake had brain surgery, to remove the "hot spot" that was causing his seizures. Grunberg credits the surgery with changing his son's life. Now Jake's seizures are much less frequent -- every few weeks, rather than every day.

"You'd never know Jake had epilepsy," Grunberg says, "unless you saw him have a seizure."

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But while epilepsy has never slowed Jake Grunberg down -- he goes to school and plays baseball and does all the things that typical kids do -- his dad is aware that there are a host of misconceptions about epilepsy. Grunberg decided that he wanted to "change the way the world looks at epilepsy," so he partnered with the Epilepsy Foundation to create Talk About It, a website designed to provide information and foster conversation about epilepsy.

Grunberg is no stranger to social media -- he was one of the first Hollywood celebrities to use Twitter -- and he knew that the web was the easiest way to reach people and get them talking. The site is full of useful information about epilepsy, and the tone is light and fun. Chris Pine and Zachary Quinto (James T. Kirk and Mr. Spock) banter about what to do if someone has a seizure, while musician John Mayer dishes about how a seizure disorder affects a person's lifestyle. How did Grunberg get all these famous people to help with his project? Simple: He carries a camera with him everywhere, and when he runs into other celebrities, he asks them, "Will you do this for me?" They always say yes.

Talk About It's tone is pleasant and upbeat, and the design -- the various video clips are all framed by a subway tunnel back drop -- is edgy and fun, which is exactly what Grunberg wanted. "If the name was 'Talk About Epilepsy,' it would be scary," he says. The goal of the site is simple: To change the way we talk about this disease. That way, Grunberg says, "It's not so scary and everybody's prepared."

Grunberg fosters open conversation about health issues with his own kids, and encourages other parents to do the same. "If they see a child that has something that makes them different in some way, ask them about it. Don't pull your kids away, don't be afraid -- put yourself in that position for about five minutes and ask them." His own kids -- Jake and brothers Sam, 5, and Ben, 9 -- are happy to talk about Jake's seizure disorder; to them, it's a fact of life.

Grunberg is affable and funny and easy to talk to, which makes him the perfect person to stand up and speak out about epilepsy. To him, this is just a conversation -- it's not frightening or upsetting, despite what he's been through with his son. "When things are really tough," Grunberg says, what matters is "knowing that there's a light at the end of the tunnel, and that you're not alone." Talk About It provides that light, for parents and families and friends of people impacted by epilepsy.

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AdviceMama Says:
Start by teaching him that it is safe to do so.