2005 Public Policy Institute and Kids Speak Up!

Advocates Bring Epilepsy Message to Capitol Hill

The largest-ever gathering of epilepsy advocates has taken place in Washington, D.C. Nearly 300 participants attended the 2005 Epilepsy Foundation Public Policy Institute and Kids Speak Up! program, April 4-7. The Public Policy Institute is the Foundation's centerpiece advocacy initiative, during which Epilepsy Foundation affiliate staff, parents, children, doctors and volunteers come from all over the country to receive advocacy training and to discuss the needs of people with epilepsy. We were successful in meeting with key legislators who responded very favorably to our message.

Advocates urged their members of Congress to support legislation to increases in funding for critical public health programs at the Centers for Disease Control and Prevention (CDC), the Health Resources and Service Administration (HRSA) and the National Institutes of Health (NIH). They asked House of Representatives members to show their support for these increases by signing the Dear Colleague letter circulated by Rep. Neil Abercrombie (D-HI) and Rep. Michael Ferguson (R-NJ). Specifically, the advocates support $9.56 million in funding for the epilepsy program at the CDC and $3 million for the epilepsy program at HRSA, in addition to increases to the NIH budget that at least keep pace with inflation.

Advocates also urged their representatives to recognize the importance of the Medicaid program to support the health and well-being of children and adults with epilepsy. With the Foundation, they ask that Congress place no cuts, no caps and no block grants on the Medicaid program.

Children Make a Difference

A special part of the Public Policy Institute is the Kids Speak Up! program, which provides an opportunity for children with epilepsy and their parents to visit the nation's capital, to meet with their legislators, and tell their personal stories. Children are selected by the Foundation to take part in the program, and this year children were selected from 35 states. Many were joined by their siblings, who also helped to tell the families' stories about living with epilepsy.

Many children found unique ways of telling their story, from Sam Miller and Derrick Roberts' personalized bookmarks to Claire Rose's program from her professional New York City Respect act, and from Ally Szkoda's pink "I have 1,500 seizures a day; Please help me" tshirt to Kevin Tsuchida's hand-colored seizure description book.

These compelling presentations, combined with the brand new epilepsy awareness bracelets each group delivered in their meetings, made a definitive impact on the Members of Congress.

We thank our sponsors for their tremendous support: Abbott Laboratories, the American Epilepsy Society and Pfizer, Inc.