Raising hope: Epilepsy resource center opens at Greater Naples YMCA

November 20, 2017

Raising hope: Epilepsy resource center opens at Greater Naples YMCA

The Epilepsy Foundation of Florida’s resource center is the first in Southwest Florida.

What was once just closet space inside the Greater Naples YMCA is now a safe haven for people affected by epilepsy.

The Naples epilepsy resource center is the latest addition to the Miami-based Epilepsy Foundation of Florida, which has seven offices statewide.

The center opened its doors Wednesday with a purple-themed celebration and ribbon cutting ceremony, also recognizing National Epilepsy Awareness Month. 

Purple, white and silver balloons hovered over the crowd as guests got a chance to tour the room-sized center.

“A lot of what we do as a foundation is education because there’s a big stigma about epilepsy,” said Karen Basha Egozi, CEO of the Epilepsy Foundation of Florida.

“And what we attribute the stigma to is that people are uneducated. When you’re uneducated, you’re afraid,” she added.

Egozi hopes the resource center, the first in Southwest Florida, will help break that stigma.

And so does the center’s new coordinator, Daniel Rosenfeld.

The Naples resident and epilepsy advocate has big plans for the small space.

That includes educating Southwest Florida families about epilepsy, organizing support groups and giving out referrals.

“I’m going to hit the pavement like I’ve being doing since day one and continue to do my work for the community,” Rosenfeld said inside his new office space.

The room is big enough for two desks, several chairs and dozens of heart-warming photos of past fundraisers put on by his family to benefit epilepsy research and awareness.

Words on the wall read: “Break the stigma. Spread awareness. Find a cure.”

Those words hit close to home for Rosenfeld. He was diagnosed with epilepsy at 11 years old.

One in 26 people in the United States will develop epilepsy at some point in their lifetime, according to the Epilepsy Foundation.

As Rosenfeld got older, his seizures became uncontrollable, making him unable to work, drive and live on his own. He lives with his parents, Lizzie and Burt Golumbic, in Naples.

Instead of letting the disorder get the best of them, the trio decided to take action seven years ago with the inaugural Walk the Talk for Epilepsy fundraiser.

This past year, they raised $60,000 for research and awareness.

Lizzie Golumbic said she’s excited about having a work space. Before, they worked out of their house or at their family’s dental business.

“It’s not very big, but we need to have a place where people feel like they can talk about this. It’s now out in the open. It’s on the door and on the walls,” she added. “If somebody walks by and sees this, they hopefully will feel comfortable enough to come in and see a young man here whose got it too.”

Before Rosenfeld and his two friends — Jacob Wolfe and Michael Weinstein — cut the ceremonial ribbon, a handful of local doctors and families shared personal stories about epilepsy.

Stephanie Davis knew nothing about the disorder until her daughter Olivia had her first seizure.

Davis said Olivia started having about 10 to 20 seizures a day when she was only 7 years old.

She didn’t know where or who to turn to.

“Many years ago there was no support in Southwest Florida for those suffering from epilepsy…we felt isolated,” she said.

Davis went on to say that though she wished something like the resource center was around when her daughter was younger, she’s happy it’s finally a reality.

“This resource center is so important. Not just to have a physical space, but because the number one thing we’re offering with this facility is we’re letting people in our community know that if you have epilepsy, you are not alone,” she said.

To learn more about the local center, call 239-778-8316 or email DROSENFELD@EFOF.org.

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