Celebrity spokesmen are a dime a dozen these days. There are a lot of good causes out there, and almost all of them have a famous face attached. But maybe no disease is more in need of a good one than epilepsy.
Despite affecting almost 3 million Americans — that’smore than multiple sclerosis, cerebral palsy, muscular dystrophy, and Parkinson’s diseasecombined– and some 50 million people worldwide, epilepsy remains misunderstood, misdiagnosed and rarely talked about.
And Greg Grunberg is a talker. You probably know him from NBC’s Heroes (or, if, like me, you were a teenage girl in the late 1990s, from his “Felicity” days).
But since his son Jake was diagnosed seven years ago, Grunberg has become epilepsy’s public face. He’s appeared at events, raised money, and last year launched TalkAboutIt.org, a spiffy online community and resource guide that encourages people to get information and share their stories.
Grunberg is just the kind of public face epilepsy needs. He’s a family man, married to Elizabeth for almost 18 years and father to Jake, Ben and Sam. He’s an accessible celebrity, the kind of guy you’d grab a beer with or the kind your grandmother would really like. And he’s a truly charming interview, which I found out when we chatted from his Vancouver movie set about his foundation, his rock star alter ego, and his (totally unprompted) gushing about Chicago, where he and his band will open the Taste of Chicago later this month.
What’s the life of a celebrity spokesman like?
Glamorous. [Laughs] No, it’s incredibly rewarding, especially when you have the personal stake in it that I do. I had been involved in some charity work before this [a program putting books back in schol systems and some Jewish philanthropies] and I wouldn’t say my heart wasn’t in it, but this is different. It’s given me a sense of purpose, and it’s so much more rewarding than anything else I do. I go around talking to people and I learn something every day. There are so many Jakes out there.
What’s one thing you’d want people to know about epilepsy?
It’s not a one-size-fits-all disease. For about 25 percent of people, including Jake, it’s not easily controlled by medication. We spent years with different doctors, trying different things, and finally ended up at Rush [Memorial Hospital] in Chicago, which was just fantastic. But it’s a process, and it’s one you need to be as prepared for as humanly possible. Run, don’t walk, to an expert and find out everything you can.
How’s Jake doing now?
He’s doing great. It’s kind of like a perfect game — you don’t really want to jinx it — but he’s doing very well now. He’s graduating from middle school next week and I’m going to fly down for it, and then the whole family is going to come back up to Vancouver for vacation.
I think you were gushing about Chicago and then I interrupted you. Please continue.
Elizabeth and I have a real spot in our hearts for Chicago. I just felt like I was in good hands, both with the doctors at Rush, who were phenomenal, and the entire city, which just embraces you in a way L.A. doesn’t. Having your child undergo surgery – any surgery – is terrible, and when the outcome was as uncertain as it was for us with Jake, it’s just a nightmare as a parent. And to have the people of Chicago be the way they are, I’ve never experienced anything like it. I walk down the street there and don’t get bothered the way I do other places. It’s got a great vibe. It was an awful few weeks for us, and something I hope we never have to do again, but I’ll never forget how great Chicago was.
And you’re coming back! And as a rock star, which probably beats being the parent of a hospital patient?Tell me about the Band from TV.
I’ve been meaning to come back and say thanks, and when the opportunity [to play at Taste of Chicago] came up, we jumped on it. It’s going to be a fantastic weekend, and I couldn’t be more excited, especially to be there and NOT have to spend it at the hospital. (laughs). No, we’re actually going to cut the cake on the first day at the Taste, and the whole band is really excited.
The band is really a collection of a bunch of celebrities who can really play. We’ve raised more than million in the past two years for different organizations. Doing something that doesn’t involve me making a penny feels great, and that’s how all of us feel about this charities that we’re really passionate about.
The Band from TV will play four shows in Chicago later this month, including the opening set at Taste of Chicago and a set at the new Harry Caray’s at Navy Pier. The proceeds of its show at The Vic will go toward the Epilepsy Foundation of Chicago. For tickets and information, click here.
Have an iPhone? For a coupon, click here for the Yowza! app.