Kids RULE!

By Lisa Boylan, Editor, EpilepsyUSA

Forty-five kids with epilepsy recently descended on Washington to tell their stories to legislators through the Kids Speak Up! program.

Dubbed the “rock stars” of the conference, which runs in tandem with a Public Policy Institute to educate parents on advocacy strategies, the kids did speak up—loud and clear.

Chris Ames, a 10-year-old participant, strode confidently to the stage on the first night of the conference and said, “I’m not ashamed to have epilepsy. I don’t care what people say; I just keep going. I’m a one-man army!” His comments elicited a wave of cheers and applause among the crowd who obviously enjoyed the moment of solidarity, as someone their own age acknowledged what it’s really like to live with epilepsy.

Artists were on hand to draw caricatures of kids with D.C.’s famous monuments serving as a backdrop to their exaggerated images. Professional basketball player “Mighty Mike” Simmel wowed the crowd with his basketball moves, interspersed with powerful motivational messages. He said, “How you deal with adversity is a measure of the person you’re going to become.”

At the end of the first evening, kids sat glassy-eyed in front of plates containing remnants of macaroni and cheese, chicken tenders and melted ice cream. They held their plastic-encased caricatures and prepared for a day of fun, as well as training, on how to convey their individual stories to congressional representatives and aides.

During this conference, the kids were no longer one-man entities, but a united band of 45, ready to put a face, a smile and an indelible image about life with epilepsy to send to Congress in order to raise funding, awareness and ultimately find a cure for epilepsy.

The Kids Speak Up! program is sponsored by the Epilepsy Foundation with support from an educational grant from Abbott Laboratories.