Whether he’s flying his X-Wing as Snap Wexley in Star Wars: The Force Awakens, patrolling the streets as an LAPD and NYPD officer in the NBC series Heroes, or driving rockstar Jackson Maine in A Star Is Born, actor Greg Grunberg has proven that he can take on memorable and fearless roles in various blockbusters. But it’s his fatherly love and fervent advocacy in the epilepsy community that may be the most awe-inspiring than any action hero role out there.
Greg’s son Jake, 23, has lived with seizures since he was a small child. Despite trying multiple medications, Jake’s seizures persisted and became worse as he grew older. By age 12, he was having hundreds of seizures per day. It turned out that Jake has drug-resistant epilepsy (DRE), which meant there was only a 5 percent chance that medications alone would be enough to control his seizures.
After years of searching for the right mix of treatments, Jake is now a thriving young adult. His seizures are controlled thanks to medication, VNS Therapy, brain surgery, and a combination of lifestyle modifications and other treatments. On Nov. 5, Greg and Jake spoke at the 7th Annual Epilepsy Awareness & Education Expo at the Disneyland Hotel. The free expo featured over 60 non-profit support groups, several epilepsy centers, drug and related product manufacturers, seizure dogs, and a variety of professionals and exhibits from all over the world.
In celebration of National Epilepsy Awareness Month, Greg will also host the End Epilepsy Live! telethon on Saturday, Nov. 9 at 2-6 p.m. PT. The celebrity-filled event will raise funds for the Epilepsy Foundation. He hosts the podcast “Talk About It! – The Podcast,” produced by the Epilepsy Foundation, which helps raise epilepsy education and awareness with interviews and profiles of people living with epilepsy, facts and stats about epilepsy and seizures, tips on healthy living, and special celebrity guests.
We chatted with Greg about his growing efforts as an epilepsy advocate, and his hopes for the future of his son and the epilepsy community.
Jake’s story really touched me. As a young adult with epilepsy, what challenges is he currently enduring?
Jake’s doing really well, but at the same time, he has to be confident enough until it’s safe enough for him to drive. It’s one of those things, like swimming. If he swims, he doesn’t swim alone. It’s not like he doesn’t swim or ride bikes or anything like that, but he just has to be cautious about it. When he swims, he makes sure he’s in the deep end as little as possible, or with people. It’s just common sense for him. It’s like why would you put yourself in danger? And for Jake, it’s tough because he’s 23 and he’s got two younger brothers. His youngest brother just yesterday got his license. So it’s like all of a sudden, Sam’s driving; like literally last night, I called my wife and she was like, “Sam just took the car and got chicken wings and went over to his friend’s house to study.” And Jake is sitting there in the car listening, and it’s hard for him. He would love to do that, or just go grab frozen yogurt or something. And we don’t live in a small city where you could just Uber or something around. L.A. is very spread out. So he still faces those challenges.
In what ways has being an advocate for the epilepsy community do you feel has helped Jake in his journey?
You know, there are times I’m sure that he feels I’m too vocal (laughs). He’s always done the National Walk for Epilepsy, but then VNS Therapy (Vagus Nerve Stimulation) reached out to us asking if Jake wanted to be an advocate. He’s had VNS Therapy for all these years and he’s doing well with it. And he really just embraces the role of standing there talking to others about it. There are concerns that people have or questions about VNS, and he’s so happy to share his story; it seems like it’s therapeutic for him. It’s so great.
There has always been a stigma that surrounds epilepsy. Since you became involved within the epilepsy community, what changes have you seen with this?
Oh my gosh, it’s funny, you take 10 steps forward and then all of a sudden you’re reminded why you’re doing this. I mean, I started helping the foundation because of that stigma. I thought if we can’t find a cure, we can find new therapies. A cure for me is a tough conversation because there’s so many different forms of seizure and people have seizures for so many different reasons. So is there going to be one thing that really finds the cure? Maybe not. But we can all benefit from taking naps, eating right, taking our medicine on time. And you know, something like VNS therapy is something that helps so many people, but there’s all kinds of different therapies and different things that you can do to help yourself. So if you don’t talk about it, you don’t know what’s out there.
It used to be really rural. I would meet people that have told me, “I don’t live anywhere near a city that has a hospital with a neurologist.” Not to mention pediatric neurologists or epileptologists. Like that word alone, epileptologist, people are like, ‘What is it?’ It’s a specialist; a neurologist that specializes in epilepsy. So this tunnel of knowledge — it wasn’t out there the way it is now; you really had to seek and find it. I mean, I’ve been doing TalkAboutIt.org for a long time. I get a company like VNS Therapy to get behind me, because we want to support this. We want to help. They helped with the podcast. They help with the Epilepsy Telethon that’s coming up this weekend on Saturday from 2-6 p.m. live with all of these incredible performers.
Having said that though, somebody just came up to me (at the expo) and told me that the fact that her grandparents are here is monumental. She said she has been dealing with epilepsy for 23 years, but her parents are in complete denial and won’t even use the word “epilepsy.” I said, ‘Wait a minute. You’ve been dealing with this for 23 years by yourself? What happened before that?” And she said doctors would tell her parents that she had it, but they wouldn’t acknowledge it. Until she reached adulthood, they would not even acknowledge it. I mean to think of somebody struggling like that within their own family!
So, yes, we’ve come a long way, but individually, everybody’s fighting their own unique stigma battle. And I’m just there to help and give people the tools so that they can say to their grandparents or family members or teachers or coaches or spouses or boyfriend or girlfriend, “Hey, go to this website, look at all these famous people that are talking about it.” This is not something to be ashamed of, you know?
How wonderful. So would you say your mission is to continue to bring a positive light to the disorder so others will be more open to talking about it?
Yes! That’s why I have rock stars joining my cause. I have a comedian, I have a magician. I’ve partnered with the Lamborghini, I’ve partnered with Ford. I partner with all of these cool brands so that it’s like, ‘Oh, this is just as normal as Stand Up to Cancer’ or any of these other charities that do it so well. But we have a long way to go, because the awareness of the community is very low. Many don’t know anything about the telethon this weekend for example. I mean, it’s crazy to me. It’s such an uphill battle. It’s going to be on CBS stations locally and on Twitch, YouTube and on my social media @GregGrunberg on Instagram and on Twitter. We have so many stars this year. We’re doing this thing where it’s Star Wars versus Star Trek. So we’re getting all these people to go honest. William Shatner for example, is like, ‘Yeah, I’m all Star Trek.’ (laughs). But we’ve got so many celebrities attached to this year with great performances, and it’s going to be a lot of fun.
Especially being in the limelight currently with “Star Wars: The Rise of Skywalker” premiering soon, do you feel like that has helped a lot with your advocacy movement?
Oh my gosh, for sure. I’m at this expo signing my own action figure, for instance. I have like all these things that attract people. It’s all about getting people to come. So others aren’t afraid to talk about it. If they come up and ask for my autograph, I can say, “Oh, by the way, why are you here?” Then boom. I’ve converted one more person to not be afraid to talk about it, which is great.
I also just announced something huge. If you go to omaze.com/greg, I am giving people the chance to win the opportunity to go to the “Star Wars: The Rise of Skywalker” premiere with me. Two tickets to go walk the carpet, see the movie, and go to the party; they’ll fly out and will be put up at a four star hotel. All of the money will go to the Epilepsy Foundation and anybody from all over the world can enter. I’ve been teasing it. I’ve been saying big “Star Wars” news because if I said “big epilepsy news,” people sadly will not pay as much attention to it. But to have Lucasfilm and Disney behind it? That’s huge. Daisy Ridley has one, Adam Driver has one, and I have one for the foundations we support. It’s so wonderful.
What are your hopes for the future of the epilepsy community?
Well, looking around at the (Disneyland Epilepsy Awareness & Education) Expo alone, makes me wonder how is it possible that it is not packed? 65 million people around the world have epilepsy or a seizure disorder. One in 26 is going to have a seizure in their life. I look at the size of the expo, and while there’s a lot of people that came, it’s nothing compared to what it should be. This is all because of the low amount of awareness. The world needs to know more about epilepsy, and I’m putting in the work to help.
END EPILEPSY Live!
When: Saturday, November 9, 2019, 2:00-6:00 p.m. PT
Why: To raise awareness and funds to support the more than 3.4 million people in the United States living with epilepsy and seizures
Go to: epilepsy.com/live