Greg Grunberg: A Hero For Epilepsy

When their son Jake was 7 years old, Greg Grunberg and his wife Elizabeth thought he had a problem paying attention. When they spoke to him, sometimes he would just stare off into space for three to five seconds at a time. "We thought he was ignoring us," says Grunberg, best known for his roles on TV hits like Heroes and Alias. "We reprimanded him. We said, 'Stop staring.'" But soon, the staring spells were lasting longer. At his annual checkup, Jake's doctor told Grunberg and his wife that their son might have epilepsy. "We looked at each other and said, 'What do we do?'" he recalls.

The couple didn't know where to begin. They didn't know what types of doctors they should consult. They didn't even know that seizures could take a form other than the type where people fall to the floor shaking, that the condition could manifest itself as muscle twitching, or as Jake had it, staring spells. Jake saw neurologists and epileptologists. He even had brain surgery and implants.

Seven years later, Jake, now 14, has found a combination of therapies that has kept his seizures largely under control. But Grunberg and his wife are constantly attentive to his changing needs. Through all this, they have learned a lot about epilepsy — and how difficult it is to find the right information about the condition.

Over the years, Grunberg has participated in four National Walks for the Epilepsy Foundation. At the most recent walk (below, left), Jake took the first step leading 10,000 other walkers. Grunberg says he's talked to a number of doctors at these events and "everyone had the same message: People need to just talk about it," he says. "I was like, 'This is the biggest problem where I can help and use my celebrity.'"

Last March, Grunberg launched TalkAboutIt.org, a website dedicated to doing just what it says: getting people to talk about epilepsy. The stigma surrounding the condition has largely left the disorder, which affects 3 million Americans, with few comprehensive places to turn for information. The site aims to change that.

Grunberg has recruited doctors, experts and celebrity friends like Jennifer Garner, John Mayer and Hayden Panettiere to present information on the site like how to live with the condition, what parents can do when they find out their kids have it and how to monitor medication. It also dispels myths about epilepsy like the one about putting a wooden spoon into the mouth of someone having a seizure. (When you see someone having a seizure, don't put anything into their mouths. You should help them get to the ground gently and make sure they are not lying on anything sharp.)

Most importantly, Grunberg wants the site to help people feel free to talk about having epilepsy. It's both a matter of eradicating the stigma and a matter of safety. If no one around you knows you're going to have a seizure, they won’t be prepared to help you when it does happen, he explains.

The lesson of talking openly about epilepsy is one that Grunberg carries out at home with Jake's two younger brothers Sam and Ben. "They play PlayStation against Jake, and Jake will go into seizure and Sam will keep playing. He'll rack up more points and at the same time he’s yelling, 'Seizure!' while Jake's on the couch and he’s fine. To them its just part of their daily lives," he says.

As a result, Grunberg says, Jake has felt very open talking — and joking — about his condition himself. "We were on set of Heroes. [Co-star] Milo [Ventimiglia] had to have a seizure in that episode and Jake happened to be there that day. Milo went over to Jake and said, 'I want to make sure I’m doing this right.' Jake looked at him and said, 'I don’t know. I’m the one person who doesn’t know [what it looks like when I'm having a seizure.]' I thought that was awesome. Milo's asking the one person in the room who doesn’t know," Grunberg laughs. Ventimiglia appears on TalkAboutIt.org speaking about what to do when you're bullied for having epilepsy.

Grunberg is also getting the word out through his band, Band From TV, which features famous friends like Hugh Laurie, Jesse Spencer, James Denton and Scott Grimes. The band plays gigs every couple of months to raise money for their respective charities.

Meanwhile, Jake has been seizure-free for months. Seeing what his advocacy has done for his son, Grunberg intends to keep "yelling about it." "I don’t want anyone to tell Jake he can't swim, ride a bike, hold a job," Grunberg says. "He's is an all-star in baseball. He's almost a black belt. I want Jake to get every opportunity that he wants."

Photos courtesy of Edelman PR.