Greg Grunberg, Heroes Reborn and Star Wars: The Force Awakens actor, and Phil Gattone, President and CEO of the Epilepsy Foundation spoke with Jessica Keenan Smith, Founder of Living Well With Epilepsy about the revitalization of the TalkAboutIt.org site.
Living Well With Epilepsy: Greg, can you tell us more about your personal experience with epilepsy?
Greg Grunberg: My son Jake started having seizures when he was 7, he is 19 now, and we have been through the rollercoaster. He’s had two brain surgeries and every kind of seizure imaginable [and now] he is very close to being controlled.
LWWE: Greg, tell us more about TalkAboutIt.org and what makes the site unique?
GG: TalkAboutIt.org is a place where people can lean in, tell their story, they can feel comfortable and part of a community. It’s something I saw a need for right away. There is such a stigma attached to epilepsy and seizures in general. When in fact it is like any other condition and if everyone is educated and free to talk about it then it’s not scary.
LWWE: Phil, tell us about your connection to epilepsy and how you got involved in the Epilepsy Foundation.
Phil Gattone: My wife Jill and I have a son, Phillip, who has epilepsy. He had first seizure when he was four years old. [When he was diagnosed,] it was 1991 so we were in libraries searching for information. We were fortunate to find an Epilepsy Foundation parent support group and they connected us with an epilepsy center. Phillip has had two brain surgeries and has since graduated college.
LWWE: Greg, How do you think projects like yours can change the conversation?
GG: When you go on TalkAboutIt.org you’ll see every actor that I’ve ever worked with and they are tackling topics from bullying to what to do if someone has a seizure. The site is evolving all the time.
LWWE: How does your son feel about talking about epilepsy.
GG: Jake is very comfortable talking about it. In fact, there are times when I will go to a school for an in service and we ask the teachers and staff what they think you should do if someone has a seizure. The next day people come up to Jake with questions.
LWWE: Greg, Do you find yourself “Talking about it” in unexpected situations?
GG: I find myself all the time in an elevator or on a set and someone will come up to me and strike up a conversation about epilepsy and seizures. It’s something you don’t have to keep to yourself anymore.
LWWE: Phil, what motivated the Epilepsy Foundation to get involved with Greg and TalkAboutIt.org?
PG: What greg has done with his celebrity status to bring this message forward to the epilepsy community and to the general public is unique and we are so grateful.
Greg Grunberg, Heroes Reborn and Star Wars: The Force Awakens actor is an avid epilepsy advocate who is partnering with the Epilepsy Foundation to launch the new website TalkAboutIt.org, which is sponsored by Sunovion. With new interactive features, shareable tools, and resources for the epilepsy community, TalkAboutIt.org unites celebrities with top health care experts to share content that addresses misconceptions about this condition.
Phil Gattone, M.Ed., President and CEO of Epilepsy Foundation has served as Epilepsy Foundation President and CEO since 2012. Under his leadership, the Epilepsy Foundation successfully merged with the Epilepsy Therapy Project and re-launched epilepsy.com as the primary epilepsy education portal in the world. Phil has a long personal history with the epilepsy community as a father, leader, and educator. At the age of four, his son Philip, now 28, was diagnosed with epilepsy and continues to live with epilepsy today. Since then, Phil has educated thousands of people across the country about epilepsy and its impact on families. He has also developed curriculum for educators on strategies for building self-esteem and academic achievement in students with epilepsy, as well as a curriculum for students to become better-educated about seizures and epilepsy first aid.