The Epilepsy Foundation of Long Island has an active grassroots advocacy network where consumers effect change on an individual basis at the local, state, and national levels.
At the Epilepsy Foundation of Long Island, we believe that by raising the level of awareness and teaching the general public about epilepsy, we can help reduce the fear and stigma associated with the disorder. If you are interested in advocating on behalf of the Epilepsy Foundation of Long Island, contact Janet Romeo, Community Education Coordinator, (516) 739-7733, ext. 145 or commed@epil.org.
Kids Speak UP
What is Kids Speak Up
The Kids Speak Up program provides an opportunity for young people with epilepsy between the ages of 7-16 to come to Washington, D.C with their families. They spend a day on Capitol Hill advocating for research funding before United States Senators and Congressman.
Why do we Advocate?
The Kids Speak UP representatives urge members of Congress to help secure a better future for all individuals 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.
Why should a child participate in the Program?
The Kids Speak UP program is an advocacy training program whereby young people make a tremendous impact on lawmakers and this has translated into greater support for epilepsy programs on Capitol Hill. There were many positive outcomes from the Kids Speak Up! programs, including substantial local and national press. It 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 by the National Office of the Epilepsy Foundation to come to Washington D.C?
All interested participants located in Nassau or Suffolk Counties of New York should contact the Epilepsy Foundation of Long Island. Children of all abilities and ethnic backgrounds are encouraged to participate, 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 by the National Office of the Epilepsy Foundation through a national selection committee. Once a child is selected to participate, the parent must agree to allow the Epilepsy Foundation of Long Island and the National office to share 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. Selection criteria varies and includes the family's experience in advocacy at the local, state and federal level and involvement in community outreach.
