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Actor and epilepsy advocate Greg Grunberg wants the world to ‘talk about it’

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Greg Grunberg has been a mind-reading superhero, an intergalactic fighter pilot and an inventive friend to Keri Russell’s Felicity. But even with his successful acting career, the role Grunberg perhaps takes the most pride in is patient advocate for those with epilepsy — including his 27-year-old son, Jake.

Although epilepsy is not particularly rare, it’s a condition that’s not well understood or discussed enough, Grunberg said. So the actor and producer has embarked on a journey. In partnership with Jazz Pharmaceuticals, which through the 2021 acquisition of GW Pharmaceuticals, sells the epilepsy drug Epidiolex, Grunberg is working to open up a wider conversation about the condition.

In 2018, Epidiolex became the first drug approved by the FDA containing cannabidiol oil, which is derived from marijuana, and Grunberg said it’s worked well to control seizures in three rare and serious forms of epilepsy. 

“At the beginning, I wish I had someone to call on. And now, I’ve tried to become that for other people.”

Greg Grunberg

Actor and epilepsy advocate

Now, Jazz and Grunberg are aiming to connect the epilepsy community through a series of videos called “Talk About It,” where fellow celebrities give voice to the issues epilepsy patients are facing. He also partnered with Jazz to crank out a well-produced series called “The Care Giver,” in which he tells epilepsy caregiver stories to “remind us all that no matter what you’re going through, you’re not alone.”

“The people caring for people with epilepsy are heroes,” Grunberg, a star of the television series “Heroes,” said. “They’re dealing with this on a daily basis, whether they tell you or not. It’s something they think about, and I am so proud to be standing side by side with them to say, ‘You’re doing an amazing, amazing job.’”

We spoke with Grunberg about how he got involved with the epilepsy community, how he’s using his voice and platform to do better advocacy work and how his relationship with Jazz Pharmaceuticals has been rewarding for everyone involved.

This interview has been edited for brevity and style.

PHARMAVOICE: First of all, how’s your son Jake doing these days?

GREG GRUNBERG: Jake’s doing great! He’s a quote-unquote normal young man. Well, he’s 27 — he’s not really that young anymore. He has epilepsy, and it’s a terrible condition because it’s kind of an invisible thing. You don’t know someone has epilepsy or another seizure condition until you see them have a seizure. And it’s something that’s always in the back of our minds, and it can strike at any time if you don’t do the right thing. But by having a great support group around him and around us, we’ve created this community. Through the projects that my wife and I have done over the years, the community that we’ve connected with is incredibly resilient, and wonderful people who are starting to remove the stigma that’s been associated with epilepsy and seizures for so many years.

What made you first consider that this was something that would benefit from your voice and platform?

I was speaking at events to raise money for our local hospital and the Comprehensive Epilepsy Center at Children’s Hospital Los Angeles, and after telling my story over and over again, I met some wonderful people in the national organization, specifically [former Epilepsy Foundation CEO] Phil Gattone and [Epilepsy Foundation vice president of communications and digital strategy] Ken Lowenberg, who had been working at the national office. And the three of us formed this organization called Talk About It, where we magnify the messaging and help advocate for many different causes. Epilepsy, of course, is the biggest one. I just kept hearing the same thing from people saying no one wants to talk about this. Things like, never stick something in anyone’s mouth when they’re having a seizure. So I went back and enlisted the help of every single actor, athlete and musician I knew. And the way that I can truly help is to use my face and use my voice.

That’s what a lot of this caregiver series is all about — because that community I’m part of, we can all learn so much from one another. I’ll sit down with somebody who is completely different from me, but also a parent of a child or a person who has epilepsy. And I’ll learn something about how, as a caregiver, you need to take care of yourself to be able to take care of others.

What does the epilepsy journey look like to you as a father and advocate that you would want drugmakers to know as they look at it clinically?

When I get the opportunity to talk to people who actually make medications, it’s always about the patient experience. Whether it’s offering something in a pill form, or with a certain device, or just understanding and hope. I’ve worked with different charity events and projects with pharma companies and have never been disappointed. There is a massive want to connect with the patient or the caregiver and understand that perspective.

And as far as the community … we look at each other and we just get each other. We joke and use humor that other people might not get, but we know we’re all in this together.

What is your relationship like with Jazz Pharmaceuticals in developing the caregiver series?

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