22 March 2004

by Anai Rhoads

AnaiRhoads.org - The grassroots organisation Epilepsy Foundation, developed a programme called Kids Speak Up to help children with epilepsy and their families make their voices heard in Congress.

"This programme amplifies the voices of children with epilepsy so they can be heard in the halls of Congress. It gives congressional leaders a better understanding of the real struggles children have in dealing with epilepsy. And, most importantly, the programme gives these children a chance to play a role in creating a brighter future for themselves," said Tony Coelho, chair-elect of the board of directors of the Epilepsy Foundation and a person with epilepsy.

With the help of the organisation, several families will seek assistance from their Senate and House representatives on Capitol Hill on Tuesday, March 23.

Kids Speak Up is supported by Abbott Laboratories, who offered an educational grant to the organisation. Roughly 200 epilepsy advocates plan to attend the Foundation's annual Public Policy Institute along with the children during the scheduled three-day event.

The Centers for Disease Control (CDC) released a survey in the November issue of Epilepsia which found that only 40 percent of adults understand epilepsy and know what to do if they witnessed someone having a seizure.

"Epilepsy is a huge problem that will take the combined efforts of the voluntary, business and government sectors to resolve. The "Kids Speak Up Program" is one step in that direction," said Eric R. Hargis, president and CEO of the Epilepsy Foundation.

Epilepsy affects approximately 2.3 million people in the United States alone and nearly 181,000 new cases are diagnosed annually. The yearly medical costs hover at $12.5 billion. A seizure happens when abnormal electrical activity in the brain causes an involuntary change in body movement or function, sensation, awareness, or behaviour. There are more than twenty different types of seizures.

"For people with epilepsy and their families, access to quality, affordable health care is critical to living with this serious chronic disorder," said Hargis. "The 'Kids Speak Up' programme is an important step in raising Congressional awareness of the serious medical and social issues facing children with epilepsy. In addition to shoring up the ADA, we are calling for expanded support for the epilepsy public health agenda being carried out by the Centers for Disease Control and Prevention, and the Health Resources & Services Administration."

References:

Begley CE, Famulari M, Annegers JF, et al. The cost of epilepsy in the United States: an estimate from population-based clinical and survey data. Epilepsia 2000;41:342--51

Hauser WA, Hesdorffer DC. Epilepsy: frequency, causes and consequences. New York, New York: Demos Publications, 1990:1--52.

CDC - Seizures and Epilepsy

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