by Sue Ann Rybak
Mark your calendars: The Epilepsy Foundation of Eastern Pennsylvania (EFEPA) will hold its annual Summer Stroll to raise awareness and funds for the foundation on Saturday, June 16.
Epilepsy is a disorder in which the brain produces sudden bursts of electrical energy that can interfere with a person’s consciousness, movements or sensations.
Last year, the stroll raised more than $100,000. Proceeds from the event support free educational programs and services for individuals with epilepsy and their families, including – but not limited to – an annual summer camp, support groups and individual and family counseling.
The event begins at 8 a.m. with an opening ceremony and warm-ups with the radio station B101 crew. After a five-mile stroll along Forbidden Drive, walkers enjoy a picnic lunch and family entertainment by “Hatman.”
Epilepsy affects more than three million Americans – more than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson’s disease combined.
Julia Greenberger, development associate for the EFEPA, said many people are misinformed or know very little about the disease that affects one in a 100 people.
“Misconceptions about epilepsy have a negative impact on everyone in the community through lack of knowledge,” Greenberger said. “This can lead to unemployment, isolation, depression, and low self – esteem.”
She said the Epilepsy Foundation of Eastern Pennsylvania is leading the fight to end epilepsy and overcome challenges created by seizures by focusing on education, support and advocacy.
It’s time to shed some light on epilepsy.
Here are a few unknown facts about Epilepsy:
- Epilepsy is as common as breast cancer and takes as many lives.
- One in 10 people will suffer a seizure in their lifetime.
- Epilepsy can develop at any age and can be a result of genetics, stroke, head injury and many other factors.
- For many soldiers suffering traumatic brain injury on the battlefield, epilepsy will be a long-term consequence.
- In two-thirds of patients diagnosed with epilepsy, the cause is unknown.
- In more than 30 percent of patients, seizures cannot be controlled with treatment.
- Almost 500 new cases of epilepsy are diagnosed every day in the United States.
- Every four minutes someone is diagnosed with epilepsy.
- Historically, epilepsy research has been underfunded.
Dr. Michael Sperling, director of Jefferson Hospital’s Comprehensive Epilepsy Center and director of its Neurophysiology Laboratory, said there are many different types of epilepsy and many diverse factors that affect people with epilepsy.
He pointed out that “research is still critical and not adequate at this time to help us” identify and understand all the causes and factors associated with epilepsy.
Madeleine “Madge” Keehn, of Erdenheim, knows firsthand the impact epilepsy has on people’s lives and the desperate need for research and free educational programs. Keehn’s daughter Andrea died of sudden unexplained death in epilepsy.
According to the Epilepsy Foundation, an estimated 50,000 deaths occur annually in the United States from status epilepticus (prolonged seizures), sudden unexplained death in epilepsy (SUDEP), and other seizure-related causes.
“The Summer Stroll for Epilepsy is a major fundraiser for the Epilepsy Foundation,” Keehn said. “With the recent budget cuts, it is more important than ever to raise funds for research and free services.”
Keehn is deeply involved in the Epilepsy Foundation and sponsors a scholarship in Andrea’s memory each year at Camp Achieve, a weeklong, overnight summer camp for children and teenagers diagnosed with epilepsy.
The camp provides young people between the ages of 8 to 17 a unique opportunity to connect with other individuals coping with the challenges of epilepsy, such as isolation, bullying and discrimination from their classmates, neighbors and community.
Greenberger praised Keehn’s dedication and support of the Epilepsy Foundation.
“Madge has been a dedicated volunteer of the Epilepsy Foundation of Eastern Pennsylvania for many years,” Greenberger said. “She’s actively involved in our Summer Stroll, but she shines most when she is volunteering at our annual summer camp, Camp Achieve. Through the scholarship fund she has created in memory of her daughter Andrea, she has provided many children and teens an opportunity that, for many of them, has been life changing.
“It isn’t just her scholarship fund that is a gift to so many campers, it is also the smile and the individual attention that she offers each camper when she visits and volunteers her time at our various camp activities.”
Every year Keehn forms “Andrea’s Army,” a team of family and friends, who walk to remember Andrea, a well-loved dedicated young woman who loved volunteering and working in Chestnut Hill. So far, Andrea’s Army has raised $1,800. Its goal is to raise $3,000.
To register for the Summer Stroll for Epilepsy or to make a donation in Andrea’s memory, go to www.strollforepilepsypa.kintera.org.