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Santa Rosa filmmaker shares inside look at life with epilepsy

JA: Bay Area filmmaker works to improve representation for epileptics
JA: Bay Area filmmaker works to improve representation for epileptics 03:50

More than three million people in the US live with epilepsy, according to the Centers for Disease Control and Prevention. One Santa Rosa filmmaker is working to make sure they are seen and heard.

When he was a teenager, Miles Levin would volunteer at a summer camp for youth living with epilepsy.

"I start talking to young people around that age saying they've never made a friend before. 'Never made a friend before'," he said. "That was really chilling to me."

Levin understood what it was like to walk in their shoes: he'd experienced seizures at their age, and empathized with their isolation and loneliness.

To fight the stigma, the Santa Rosa native wrote and directed Under the Lights in 2019, a short film that sheds light on the neurological condition. It tells the story of a teenager who knows the lights of prom night will trigger a seizure, but goes anyway.
"It's something that most kids can conveniently take for granted, but for those who miss out, who feel left behind, it's particularly traumatizing," Levin explained.

After the nine-minute short won awards at film festivals across the country, Levin crowdfunded more than $214,000 toward the production of a full-length feature film.

Today, the movie is in post-production, and Levin hopes it will create more understanding about a community who feels forgotten.

"I want the audience to feel those universal feelings and say, 'Wow, that must be hard. That's not my experience, but I've been there. I've felt left out, I've felt misunderstood,'" Levin explained.

The film explores a range of emotions: from parents' fear of watching for the next seizure, to young people living with epilepsy who want to live a full life and feel like they're missing out.

Levin says people he's heard from feel 'seen' by the film.

"There's a tremendous power in seeing someone like you on screen. It legitimizes you. It makes you 'just like everyome else,"" Levin said.

In fact, he's overwhelmed with the response - including fanart - from people all over the world, from drawings to songs.

"It's wild. It's crazy. And the power of this has led to so many other people sharing their stories," Levin said.

Levin serves on the board of the Epilepsy Foundation of Northern California, which is supporting his movie.

Board member Russell Andrews says Levin "is not a Hollywood producer volunteering spare time to make a film on epilepsy. Miles is a person with epilepsy who is literally volunteering his life to alleviating the suffering of others with epilepsy."

So for shining a light on epilepsy through his film Under the Lights, this week's Jefferson Award in the Bay Area goes to Miles Levin.

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