Sugar Grove teen advocates for the epilepsy community

Morgan Murphy
Updated 3/22/2017 4:21 PM

CJ Girolamo, 17, of Sugar Grove, IL, will head to Washington, D.C. this Saturday, March 25, to participate in the National Epilepsy Foundation's Teen's Speak Up! policy conference, as well as its 5K walk/run.

Teens Speak Up!, the Epilepsy Foundation's signature advocacy initiative, is a national program that trains young ambassadors living with epilepsy, between the ages of 13-17, to become advocates in their local communities and in the nation's capital. Girolamo will meet with members of Congress on Capitol Hill, to urge support of efforts in improving public knowledge of epilepsy and increase aid to further research for a cure.

Girolamo was diagnosed with epilepsy at age 11 and is struggling to control his seizures. Despite these challenges, he is an avid track runner and has participated in numerous runs.

"Running is my passion and I will not let epilepsy keep me from it," Girolamo says. He is a junior at Kaneland High School where he is a member of the cross-country, wrestling, and track teams. He has participated in several of the Epilepsy Foundation of Greater Chicago's programs, including Camp Blackhawk, a weeklong retreat for kids and teens with epilepsy. Girolamo is hoping that his time in Washington, D.C. will help raise awareness for additional epilepsy research. "My hope is that someday there will be a cure for this condition."

The Epilepsy Foundation of Greater Chicago is an Illinois nonprofit organization serving 43 counties, offering counseling, advocacy and educational services to people with epilepsy, their families, and the communities in which they live. It leads the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives.

Epilepsy is a medical condition that produces seizures affecting a variety of mental and physical functions. It's also call a seizure disorder. When a person has two or more unprovoked seizures, they are considered to have epilepsy. A seizure happens when a brief, strong surge of electrical activity affects part or all of the brain. One in 10 adults will have a seizure during their lifetime and 1 in 26 will develop epilepsy. It is the fourth most common neurological disorder in the U.S. after migraine, stroke and Alzheimer's disease and its prevalence is greater than autism spectrum disorder, cerebral palsy, multiple sclerosis and Parkinson's disease combined. Despite how common it is and the major advances in diagnosis and treatment, epilepsy is among the least understood of major chronic medical conditions, even though one in three adults know someone with the disorder.