Kids Speak Up!

Children with Epilepsy March on Capitol Hill

Posted: March 19, 2002

More than 30 children with epilepsy and their families met on Capitol Hill recently as part of the Epilepsy Foundation's Kids Speak Up program. They were there with a message for more than 100 lawmakers: please help improve public awareness and understanding of epilepsy.

Kids Speak Up is a new program designed to give children with epilepsy the opportunity to meet with their congressional representatives to voice their concerns about the impact epilepsy has on their lives. In meetings with lawmakers from across the country, the young advocates described how epilepsy affects their lives and why more public understanding is so important.

"We feel the Kids Speak Up program is an important step in raising awareness of issues facing children with epilepsy," said Linda Warner, Epilepsy Foundation chair and parent of a teenager with epilepsy. "Children with epilepsy suffer when school communities do not understand them. Social stigma and isolation can be just as painful emotionally as the seizures."

Kids Speak Up is the first organized group of children with epilepsy to share their stories and unique concerns with lawmakers. Kids Speak Up is sponsored by an educational grant from Abbott Laboratories.

"It's been my life's work to research, develop and improve epilepsy treatments for children and adults. Abbott's commitment to helping people with epilepsy and their caregivers has enabled me to pursue my research goals, as a scientist and the uncle of a child with epilepsy, " said Ken Sommerville, M.D., medical director of neuroscience marketed product development, Abbott Laboratories.

Nicole Achkar, a 10 year old from South Gate, Calif., is one of the children who went to Capitol Hill on March 19. She has lived with epilepsy most of her young life. "Epilepsy awareness has been our number one objective so that epilepsy is correctly understood and not feared," said Gloria Borja, Nicole's mother.

Rebecca Anne Casagrande, a 7 year old from Houston, Texas, is also a Kids Speak Up advocate.

"I'm just a normal kid. Maybe if more people knew about epilepsy and seizures they wouldn't be so scared. I want to help people understand epilepsy," she said.

Several of the Kids Speak Up children were approached for interviews by reporters for newspapers, radio and television media. Two of the kids even appeared on the CBS Early Show.

Prior to the children's visit to Capitol Hill, they heard a rousing address from Bryan Raymond, a 10 year old from Arkansas, who was named the Epilepsy Foundation's Winning Kid last year. As the national Winning Kid, Bryan represents the 300,000 children with epilepsy in the United States. Bryan said he was excited to be in the nation's capital with so many others who, like him, have epilepsy.

"We're all different," he said. "Some of us hardly ever have seizures. Some of us have lots and lots of seizures. But we all want the same things - just like every other kid.

"We want to be busy and happy. We want to go to school. We want to have friends. We want to play and have fun. We want other kids to understand what seizures are, and to respect us," Bryan continued.

"And now, here we are, ready to tell our story to the U.S. Congress! Think about it. If we do a good job, we will be helping kids with epilepsy all across the country. That's awesome!"