Kids Speak Up! 2005 Starts With a Shout ... or Twenty

by Catherine Kane
Special to EpilepsyUSA

Washington, D.C., April 5, 2005 -- "Let's get this party started!" called out 12-year-old Mike Mielenhausen of St. Paul, Minn., to a hotel ballroom packed with other enthusiastic young people, waiting for their turn to talk about their visit to the nation's capital. Mike, the "Shining Star" of the Epilepsy Foundation of Minnesota, continued his bid to be the funny man of Kids Speak Up! 2005 by telling everyone about his prize for being selected as his affiliate office's Winning Kid. "I got to throw out the first ball at a Minnesota Twins baseball game, if you 'catch' what I mean."

Appreciative laughs and clapping echoed through the room. Mike was followed by a number of his fellow attendees, each having a turn to step up to the ballroom's podium and "shout out" their experience with epilepsy and the messages they want to share with other kids and with their elected representatives, with whom they will meet later this week.

From Long Island native Dana Giordano's smiling request to "please be nice to me," since she is newly-diagnosed, to Manhattan teen Erin Bergen's exhortation that participants "should be proud," each new voice showed another dimension of these young people's enthusiasm, motivation and diverse experience. Each was chosen to come to Kids Speak Up! based on their advocacy activities in their own community.

The purpose of Kids Speak Up!, part of the Epilepsy Foundation's annual Public Policy Institute, is to help young people with epilepsy make their voices heard and to educate their senators and congressmen about what it is like to have epilepsy. As Erin Grasty, 11, of Cincinnati notes, "it's easy to understand what's going on if you understand what is going on."

The young people explain what it is like to have a seizure, to take medications, to have a magnetic device implanted in your chest (ask 7-year-old Kevin Tsuchida of Spokane, Wash., to show you the scar from his Vagus Nerve Stimulator), to follow a highly-regimented diet and sometimes to endure teasing and misunderstanding from adults and peers.

They hope to persuade officials to support epilepsy programs and research funding. Emily Price, 12, from Owensboro, Ky., hopes that one day she will invent a patch to deliver seizure-inhibiting medications, instead of having to take a lot of pills every day.

As participants stretched their voices and tested the messages they will deliver in the next few days, they also enjoyed having their caricatures drawn by professional artists, playing charades, trying out for Epilepsy Foundation Board of Directors member Joyce Bender's radio show and eating treats like chicken fingers and ice cream sundaes. One participant was overheard telling his mother that he had ice cream - "only ice cream" - for dinner. As Eli Beller, a teen from California, says "people with epilepsy are totally normal people; you can still live a normal life with epilepsy."

Kid's Speak Up! is sponsored by a grant from Abbott Laboratories.