Amy Lee, the soaring voice of her generation, has emerged as a leading voice for epilepsy.
As lead singer of the rock band Evanescence, the 25-year-old Lee has won over millions of young fans with her angst-ridden Goth style and haunting lyrics. And now she's using her popularity to educate them about the disorder that affects her kid brother and nearly three million other Americans: epilepsy.
Lee is the face of the “Out of the Shadows” campaign, launched this year by the Epilepsy Foundation to raise awareness worldwide. The surge of interest sparked by her involvement hit a high note this fall when Evanescence's new album debuted at No. 1. In targeting a young audience, Lee hopes to eliminate the stigma associated with epilepsy by changing the way the next generation thinks about the disorder.
“This condition has the unfortunate tendency to bring out the strangest misconceptions—like the person is possessed, he or she is mentally challenged, the condition is contagious, et cetera,” she says. “In my experience, people who don't know how to handle the situation do more harm than good. In schools and the workplace, it should be as well-known as how to help someone who's choking, how to react to a fire, or any other common emergency.”
Lee learned firsthand about the effects of epilepsy from her 11-year-old brother. She even wrote a song for charity about watching cartoons with Robbie and brought him along to the TV studio when she performed “My Cartoon Network” live on—where else?—the Cartoon Network.
Since Evanescence's new CD topped the charts, her “Out of the Shadows” campaign's website (outoftheshadows.com) has been inundated with visitors linked to it by the band's official site. Now that's something to sing about.