Mother of Teen with Epilepsy and Foundation Leader Makes Congressional Appeal

5/14/2003

From: Peter VanHaverbeke, 800-470-1655, option 1 ext. 3772 Sylvia Blair, option 1 ext. 3773 both of the Epilepsy Foundation

WASHINGTON, May 14 -- Linda K. Warner, immediate past chair of the Epilepsy Foundation and mother of a teen with difficult to control epilepsy, will testify today before the Committee on Appropriations Subcommittee on Labor, Health and Human Services, Education and Related Agencies, to stress the need for an increased federal commitment to epilepsy research and access to care.

Epilepsy is a neurological condition marked by recurrent seizures. Warner will share her first-hand experience with the chronic condition, which plagues about 2.5 million Americans. Almost half of those affected receive little to no relief from currently available therapies.

Warner will urge Congress to allocate sufficient resources to programs conducted under several federal agencies. She will ask for $12.5 million for the CDC epilepsy program in order to respond to the broad array of public health needs. She will ask for an initial investment of $3 million at HRSA to create demonstration projects to improve access to health care for people with epilepsy. She will also ask for $1.65 billion in funding for NINDS in order for the agency to continue the fight against epilepsy through high level basic and clinical research.

"The seizures endured by my son Eric over the past eighteen years have resulted in a variety of injuries and hospitalizations. Numerous broken bones, plastic surgery, and pneumonia from long-lasting seizures placed Eric in the hospital several times. Hospitalizations alone have been an ordeal due to blood clots at IV sites and secondary infections. My son takes medication to prevent the seizures, but the side effects have been devastating," says Warner.

Warner will tell Congress how, aside from her son's medical problems, the overall impact of epilepsy has had an effect on every area of his life. Eric has missed over a year and a half of school, along with social events. He has faced underemployment and unemployment, his self-esteem has plummeted and he has experienced depression.

"Our experience with epilepsy is not unique," Warner will emphasize during her testimony. "With the help of Congress, researchers, advocates, parents and volunteers, I am certain that one day a cure will be found."

The Epilepsy Foundation is a network of community-based, affiliated organizations that work to ensure that people with epilepsy are able to participate in all life experiences. The organization's goals are to prevent, control and cure epilepsy through research, education, advocacy and services.