What is Kids Speak Up!

Kids Speak Up! provides an opportunity for young people with epilepsy between the ages of 7-16 to come to Washington, D.C with their familiesjoining on Capitol Hill to take part in the Epilepsy Foundation’s Kids Speak Up!This event takes place in conjunction with the Epilepsy Foundation's annual Public Policy Institute.

What is the message of the program?

The group will be urging members of Congress to help secure a better future for children with seizures by supporting federally funded medical research, programs that improve access to appropriate care, and public health education to reduce discrimination against people with epilepsy.

What is the benefit of such a program?

There were many positive outcomes from theKids Speak Up!programs, including substantial local and national press. The kids make a tremendous impact on lawmakers and this has translated into greater support for epilepsy programs on Capitol Hill. The Kids Speak Up!program is a positive educational experience for participants. It is a chance for young people and parents to share their stories with elected officials and to help increase public awareness about epilepsy.

How are children selected to come to Washington D.C?

An application must be submitted. Applications are available by calling the national office or by contacting your local Epilepsy Foundation. Children of all abilities and ethnic backgrounds are encouraged to apply, but to be eligible the child must have been diagnosed with epilepsy or a seizure disorder and currently be receiving treatment. Selection of participants will be made in conjunction with participating affiliates and through a national selection committee. Information about Kids Speak Up!will also be available in doctors' offices around the country.

What is the selection criteria?

Several factors will be considered by the selection committee to ensure diverse representation. The main criterion is geographic location. Because this is an advocacy initiative, there are certain congressional districts and Members of Congress that are key to our legislative agenda. Other considerations will include the family's experience in advocacy at the state and federal level; if they've previously attended the Public Policy Institute; involvement in community outreach; and if the child is or has been a Winning Kid. We are committed to ensuring that we have a diverse group of children that represent the entire spectrum of children with seizure disorders and we will weigh these factors when making final selections. Since there is a media component to Kids Speak Up! once a child is selected to participate, the parent must agree to the Epilepsy Foundation's sharing of information about their child's participation in the program with the print, broadcast and electronic media. That information may include, but is not limited to, the child's picture, identity and his/her experience with epilepsy.

For more information, Please contact Joseph LaMountain, if you have any questions regarding the event.