Stars Making a Social Impact: Why & How Greg Grunberg Is Helping To Change Our World

Enjoy the small moments: Last but not least, be sure to enjoy the small moments in the caregiving journey. You will have both good days and bad days, but the good moments will help you through the journey. What others take for granted we get to celebrate and appreciate on a level others might not and that is special.

As a part of my series about stars who are using their platform to make a significant social impact, I had the pleasure of interviewing Greg Grunberg.

As a performer, Greg Grunberg is best known for his work in Star Wars, Star Trek, Heroes, and Alias. In addition to his screen work, Greg has written and produced several television shows and films. He has also authored a successful graphic novel series ‘Dream Jumper’ for Scholastic. Greg is an epilepsy advocate and philanthropist to support his oldest son, who lives with epilepsy and seizures. Greg has co-created TalkAboutIt.org/TalkAboutItOnVideo.com, which is dedicated to bringing targeted education, attention, and engagement messaging to important causes and concerns such as epilepsy awareness through activating celebrities, industry, and the general public with a goal to get everyone talking about key issues that need more public attention.

Thank you so much for joining us on this interview series. Can you share with us the backstory that led you to this career path?

Many people may recognize me from the movies and TV shows that I had the opportunity to appear in; however, the roles closest to my heart are father, caregiver and advocate to my son, Jake, who is living well with epilepsy. When Jake was 7, he started having seizures. At the time, my wife and I began noticing that he was having staring spells and zoning out. These are known as “absence” seizures. We took him to his pediatrician, who referred us to a neurologist who diagnosed Jake with epilepsy. We didn’t know much about epilepsy, so we learned everything we could about the condition and how it’s treated. We decided very early on that we were going to be as vocal as possible about Jake’s condition and become advocates to help remove the stigma associated with epilepsy and answer questions for other families like ours. Also, the more we talked about it, the more those around Jake would know what to do in case they saw him have a seizure.

It has been said that our mistakes can be our greatest teachers. Can you share a story about the funniest mistake you made when you were first starting? Can you tell us what lesson you learned from that?

In general, I’m the kind of person who loves to just dive in. Say yes. Just GO. So I think the mistake that I love to make and I keep making over and over again is that I can’t say no. As an actor, I’ve been so fortunate to work on big and small projects and I just love working with good people. Not that it’s ever a mistake, but it’s definitely a gamble. Making movies and TV shows is such a collaborative effort and process, so you have to trust who you’re working with. And sometimes it works out, sometimes it doesn’t. My manager and my agent are sometimes like, “whoa, what is this thing you’re doing?” But I don’t care. I love it. They trust me. I trust them. Life’s an adventure. And I love the journey.

What would you advise a young person who wants to emulate your success?

Dream on. Just kidding. I get this question a lot. In front of groups of young actors and students, the first thing that I tell them is that if a friend calls me and says that their son or daughter is really interested in getting into acting, I get them on the phone and say, “Listen to me, you are never going make it in this business. You are never going to succeed. You are never going to make money. It’s never going to happen.” Then I wait for their response, because… if they get past that, hearing that… they’re in it for the right reasons and they are more likely to make it.

Acting is nothing but rejection. The problem with being an actor is you have to wait for others to hire you. To give you permission to do what you live to do. That’s tough. You can walk into an audition and absolutely nail it, but there’s just something about you that they didn’t like, or they were looking for something else. Or in my case I’m just too handsome… again, I’m kidding. Ha! There is just so much you can’t control.

Is there a person that made a profound impact on your life? Can you share a story?

My best friend is J.J. Abrams. He and I met when we were children when we were 4 or 5 years old. We have always enjoyed working together and look for opportunities to work with each other. Beyond acting, I learn from him every day. I learn from his work ethic, his professionalism and how he holds on to good people. If you look at the people who have worked with him, he constantly will go back to the well to work with them again. It’s the same thing if you come across somebody who’s just a good person in life. You do everything you can to hold on to that person. Or at least you should. And let go of the bad ones. You come across so many people in your life, and it’s so important to keep the great ones around. I’m very fortunate to have somebody in my life like J.J. who’s truly a brother to me.

People always say to me, I have a stroke of luck with J.J. But what we have has nothing to do with any of the show business stuff. And everything to do with our friendship and being there for each other. He’s been there for me through the really tough stuff and also the great stuff. I love him and I always turn to him. He turns to me and it’s wonderful. I’m very, very lucky to have that outside of my amazing wife and family.

How are you using your success to bring goodness to the world? Can you share with us the meaningful or exciting causes you’re working on right now?

I’m excited to be collaborating with Jazz Pharmaceuticals to host the inspirational YouTube video series, The Care Giver at TheCareGiverSeries.com. As a caregiver to my own son, Jake, who’s living well with epilepsy, I know how important it is to connect with other caregivers and share stories and experiences, and The Care Giver series provides me with an avenue to do just that.

The series shows me traveling around the country to help tell the stories of others in the epilepsy community and give these caregivers a much-needed day of care. I meet up with patients and caregivers to learn more about their personal experiences living with rare and severe epilepsies, the struggles they’ve had to overcome, and their journeys to find treatment. Our hope is to inspire families facing similar rare forms of epilepsy by bringing hope and providing strength in knowing they’re not alone. And these life lessons are universal so even if you are not a part of the epilepsy community it’s inspiring and relatable. We’re ALL caregivers to those we love.

Can you share with us a story about a person who was impacted by your cause?

My hope is that everyone I’ve met through The Care Giver has been positively impacted by this experience. I know I have. Through the series, I had the pleasure of meeting Meghan, who’s a caregiver to her youngest daughter, Cammy. When Cammy was only seven weeks old, she started showing signs of having a seizure; her arm would shake involuntarily and after a few seconds she would bounce. After taking Cammy to the neurologist and a completing a number of tests, Cammy was diagnosed with tuberous sclerosis complex, or TSC. I was so moved by talking with Meghan, reflecting on what it takes to get a diagnosis, the tendency for parents like us to settle and why continuing to advocate for our loved one is so important.

I was also able to treat Meghan to a much-needed day of care where Meghan got the chance to do something she’s always wanted to do–play pickleball! After the game, we ended the day by spending time with Meghan’s whole family and close friends. I’m thrilled to share that today, with fewer seizures, Cammy has been engaging a bit more, learning some more, and is even retaining some skills. Meghan also shared how much she loves watching Cammy keep up on the playground with her siblings and the friends she’s made at school. What can be better than that?

Are there three things or are there things that individuals, society, or the government can do to support you in this effort?

There needs to be more awareness of epilepsy and people need to not be afraid to talk about it. I hope that by encouraging members of the epilepsy community to come together to raise awareness of this serious condition and to continue advocating for patients in need, we can better understand and address the challenges those with epilepsy, their family members, and caregivers face daily. If we can get people talking about it, maybe we can also help fight the stigma behind seizures.

What are your “5 things I wish someone told me when I first started”?

Take care of yourself: The role of being a caregiver to a person living with epilepsy is a really big one. And although it varies from person to person, it is clear that caregivers tend to play many roles including manager, advocate, educator and much more. Specifically in the case of an epilepsy caregiver, the seizures and their consequences can be highly stressful. So, I want to remind caregivers that it is important to recognize these stresses that come with being a caregiver, so you can try to reduce this stress as much as possible. Remember that to be able to provide the best care for loved ones, it is just as crucial for caregivers to take the time to care for themselves. Similar to when you’re on an airplane and you’re told to put on your mask before you help anyone else.

Don’t isolate yourself: One of the biggest challenges my wife and I have faced, and learned that even other caregivers face, is thinking that you’re the only one being affected by this. The journey of caring for someone with epilepsy can feel quite isolating; but, it is important to remember that you are not alone, even dealing with a rare disease there are many shared experiences amongst others and you’re not in the journey on your own. Connecting with other caregivers will help show you, that there are in fact others out there in a similar situation as you are. Embrace others. Share stories. Talk about it.

Build a support system: It’s so important to build a system of support around you and in your community that you can turn to. It doesn’t matter who it is, whether it’s friends, other family members, or advocacy and support groups, there are resources available to help make your life and the lives of your loved ones much easier through both the inspiring and difficult moments.

Never settle: I think one of the most important things that I wish someone told me when we started on the caregiver journey is to “not settle” and “never lose hope”. As a caregiver we need to advocate for our loved ones to empower these patients, fight the stigma, and even bring caregivers together to share information and support. The more we talk about it and share our experiences, the more knowledgeable we all become and that’s empowering for everyone both in and outside of the community.

Enjoy the small moments: Last but not least, be sure to enjoy the small moments in the caregiving journey. You will have both good days and bad days, but the good moments will help you through the journey. What others take for granted we get to celebrate and appreciate on a level others might not and that is special.

You’re a person of enormous influence. If you could start a movement that would bring the most amount of good to the most amount of people, what would that be? You never know what your idea can trigger.

I actually think I’m already doing it. It’s such an isolating thing to have somebody in your family living with epilepsy. You feel alone when you’re going through it, when you’re holding your child and hoping they come out of the seizure. In my research shortly after Jake’s diagnosis, I found an amazing and compassionate group of people, the epilepsy community, who were in such desperate need of knowledge and information. And they were looking for connections. So that’s really where I want to use my influence. I want to help bring people together. They’re caregivers doing what they do out of necessity and out of love. What I found is that these caregivers are remarkable people and, through talking about it, we find that we’re not alone. That’s the essence of The Care Giver series.

As I was going down that path, I found out that Jazz was a company really advocating for patients and caregivers. So we came together, and that’s how The Care Giver series started. It’s so moving to be able to highlight and showcase these families and parents who are caring for someone with epilepsy and giving them a voice. This program is something I’m more proud of than anything else, and if my influence can help people feel like someone has their back, it’s all worth it.

Can you please give us your favorite life lesson quote? And can you explain how that was relevant in your life?

Jake likes to quote a line from the 2006 film, Rocky Balboa, that’s such a great life lesson: “It ain’t about how hard you hit, it’s about how hard you can get hit and keep moving forward. How much you can take and keep moving forward.” I don’t care what you’re dealing with, everyday life throws things at you, and you have to just put it in your rearview mirror and move forward. When Jake says it, it brings me goosebumps and proud happy tears every time.

We are blessed that some very prominent names in Business, VC funding, Sports, and Entertainment read this column. Is there a person in the world, or in the US with whom you would love to have a private breakfast or lunch, and why? He or she might just see this if we tag them.

I’ve done a movie with Tom Hanks, and no one makes me feel more comfortable, safer, entertained, or interested than when I’m watching him work or watching something he’s in. He has mastered both comedy and drama, but in ways that include the audience and don’t exclude them. Even though we sort of did a movie together, we never worked in the same scene so we never got to really interact. Tom Hanks is so intelligent and he’s a very smart businessman, and I would definitely love to sit down and have breakfast, lunch or dinner with him, pick his brain, just to learn from him.

Thank you so much for these amazing insights. This was so inspiring, and we wish you continued success!