On the NBC show Heroes, Greg Grunberg plays an ordinary guy with extraordinary powers. In real life, he credits astonishing powers to his 13-year-old son, Jake, who has lived with epilepsy for the past five years.
Epilepsy, a neurological condition that affects 3 million Americans (350,000 of them are children), causes periodic seizures, where the brain produces a sudden burst of electrical activity. During a seizure, people can shake, stare, fall down, or even briefly lose consciousness. "To deal with something on a chronic basis, like I see my son do, that’s heroic," says Grunberg.
Grunberg has been using his superpowers for good, raising awareness and funding for epilepsy. He’s a spokesperson for the Epilepsy Foundation (www.epilepsyfoundation.org), and with his charity cover band, Band From TV (featuring Grunberg on drums, Hugh Laurie on keyboard, Teri Hatcher on vocals, and others), he’s raised more than $2 million. He also recently chaired the National Walk for Epilepsy in Washington, D.C.
Greg Grunberg launches epilepsy website
His most recent effort? Launching a web site, www.talkaboutit.org, which he describes as a MySpace for epilepsy. "We treat epilepsy like something that should be hidden away, and that shouldn’t be the case," Grunburg stresses. The site gives people the opportunity to learn about the condition, exchange ideas, and find support.
It’s taken five years of various medications and even a recent brain surgery, but now Jake’s EEG (which measures electrical activity in the brain) is 90% improved. He still takes medication, but his seizures are better controlled. Today, Jake’s just a regular kid who’s almost a black belt in tae kwon do, an all-star baseball player, and a role model for brothers Ben, 9, and Sam, 5.
Knowledge is the true power, says Grunberg. "We need to remove the stigma and finally find a cure for this terrible neurological condition."