Walkers from near and far came together in East Meadow on Oct. 19 for the Epilepsy Foundation of Long Island’s Walk to End Epilepsy in Eisenhower Park.
The foundation, part of the EPIC Long Island Family of Human Service Agencies, is based in East Meadow, with headquarters on Hempstead Turnpike.
Along with the foundation, the EPIC family also includes EPIC Long Island, which helps individuals with special needs and disabilities, and the South Shore Guidance Center, a mental health and behavioral clinic. The nonprofit’s name stands for “Extraordinary People In Care” — and the breadth of its services has grown out of its work with the epilepsy community, over the last six decades.
The Epilepsy Foundation of Long Island offers educational resources, free of charge, to individuals with epilepsy in need of information, referrals for doctors, or advocacy in various sectors of their life. It also provides generalized informational programs for the public to learn more about seizures and epileptic conditions.
“We provide education, we do training and certification for people in seizure safety, seizure first response,” Lisa Burch, the chief executive and president of EPIC family, said of its epilepsy branch, “reaching thousands of people annually, providing support, guidance, resources and information.”
Irene Rodgers, the associate executive director of development and epilepsy services with EPIC, explained that the likelihood of witnessing someone having a seizure is remarkably high — and not always caused by epilepsy, a brain disease that triggers seizures, or episodes of abnormal electrical activity in the brain.
“One in 10 people will experience a seizure in their lifetime,” Rodgers said. “It’s very important to know what to do when you see someone having a seizure, recognizing the signs and symptoms of seizures, and then also how to help a person after they have had a seizure.”
Some people experience a seizure and are quickly able to continue normal life activities, while other seizures require medical attention, Rodgers said.
“There are so many other types of seizures and syndromes,” she said. “Some are very subtle. It could be where someone is appearing to just daydream and not be aware of their surroundings, and then they’re right back to whatever they are doing. So, seizures can have a wide range of symptoms — they can have a wide range of impact on the individual and their day-to-day functioning.”
Because the foundation’s services are free, Rodgers said they rely heavily on donations and fundraising activities — and the organization’s largest one is its annual walk, held in Eisenhower Park. Through the walk, the foundation aims to raise $100,000 and spread epilepsy awareness. As of press time, the foundation had raised just over $95,000 from this year’s walk, which signed up more than 550 people.
This year’s grand marshal was Natalee Weiss, a 16-year-old from Locust Valley who’s had epilepsy since she was 5. She decided to get involved with the Epilepsy Foundation, after seeing an advertisement for the walk in her local library several years ago, she told the Herald. A junior at Locust Valley High School, she’s a member of the Pre-Health Club, for teens interested in pursuing careers in medicine.
“It’s been a challenge living with epilepsy,” Weiss said, “but with the help and support of EPIC Long Island, I’ve learned to accept it. Honestly, it’s helped me learn that there are other kids too who are also living with epilepsy.”
Of the walk, Rodgers said, “People can see there is such a sense of community, which oftentimes people who are living with epilepsy feel alone, isolated. When everyone comes together in the park, it’s just a great feeling — a feeling of community, of support.”
Two years ago, Weiss traveled to Washington D.C. to take part in a program called Teens Speak Up, with the Epilepsy Foundation of America. The conference brings together teens living with epilepsy, family members and local Epilepsy Foundation office staff, to visit the nation’s capital, receive advocacy training, and meet with lawmakers to share their experiences and discuss issues that are vital to the epilepsy community.
Over the last few years, Weiss said she’s seen the walk grow — which is a great thing. “I feel like there’s a lot more people that show up now, which I am so happy to see,” she said. “It is definitely a bigger event, and I feel like we’ve been able to get this great group of people together to really advocate for such an important cause.”
The EPIC family offers many services to Long Islanders, and despite its various sectors, everything is connected, Burch said.
“You might come to us as a person with epilepsy, looking for resources, but if you’re struggling with mental health — we have that too,” she said. “There’s this wholeness to what we do, and I think that’s what makes us really special and unique.”
To learn more about the Epilepsy Foundation and contribute to this year’s donation campaign, visit EPICLI.org, and hit the Epilepsy Foundation tab.