ENDING EPILEPSY
12th annual Epilepsy Foundation of Northeastern NY event goes virtual
SARATOGA SPRINGS, N.Y. » The Epilepsy Foundation Northeastern New York is holding its 12th annual Walk to End Epilepsy this weekend. Like so many other organizations that have had to rethink their fundraising activities due to the pandemic, this year they’re going remote.
Sunday at 11 a.m. is the Walk’s virtual opening ceremonies, livestreamed on Zoom and the Foundation’s Facebook page. However, the virtual walk has been happening since Saturday. Foundation executive director Jeannine Garab will give some opening remarks, thank this year’s sponsors, and cheer on the virtual walkers.
Links to the event have been sent to registered participants only, to prevent “meeting bombs.”
Traditionally, the Walk is held at Saratoga Spa State Park. Last year’s walk had more than 800 participants gathering together. This year, walkers are encouraged to walk where they like — in their neighborhood, favorite park, or even backyard.
As press time, this year’s head count was over 300, with 40 separate teams registered for the Walk. The fundraising goal this year is $83,000, and they’re over halfway there. Foundation director of development Susan Kaczynski is hoping that this year’s walkers will still know they have the Foudation’s support, even if they can’t be together to share it.
“We still want people to know we’re there with them,” she said. “We’re used to being together.
Epilepsy affects children and adults of any age. The Walk feels like one big support group. That’s what I miss this year.”
The Epilepsy Foundation of Northeast New York serves 22 counties, providing services, support, and educational resources for people diagnosed with epilepsy and the members of their community. All funds raised from events like the annual Walk remain local, and are used to make sure programs and services are able to stay in operation.
Epilepsy is defined as having “two or more recurring seizures.” 1 in 26 people will be diagnosed with epilepsy in theirlifetime. There is currently no cure, but there are many options for treatment available, including medications, surgeries, and implant devices that use electromagnetic signals to halt seizures in progress or stop them before they start.
Part of the problem is, there are many different types of epilepsy, and not every treatment works on every patient. Some people are unable to have treatments at all, because none of them work. It’s a very individ-ualized conditon.
This year, with the new virtual format, the Foundation is trying a new feature for their Walk. They have Walk Ambassadors representing each county they serve, working to promote awareness not just of the Walk to End Epilepsy, but the Foun
dation itself.
Saratoga county ambassador Michelle Hebert, who is also this year’s co- chair of the Walk and a board member for four years, says she has been using social media to do a lot of her promoting. She’s looking forward to a socially- distanced walk in the State Park with the whole family - her, her husband, her son Zachary, and her dog.
This is an especially important year for the Hebert family. It’s the 10- year mark for Zachary being seizure- free.
“We’ve been involved with the Foundation since Zachary was 4,” Hebert said. “We got more and more involved over the years. It’s so important that the Foundation provides educational services for Zachary’s school district - they come in and teach his bus drivers and his teachers about how to recognize symptoms, first aid, what to do during a seizure.”
Zachary, who turns 15 this week, was diagnosed with drop seizures at a very young age. Fortunately, he responded well to medication treatments.
“Drop seizures are a rare type, and it’s even rarer for it to be controlled by medications,” Hebert explained. “We got so lucky. I don’t think a lot of people really understand what epilepsy is and how many people it af fects. It’s not just the big convulsions you think of when you think of someone having a seizure.
“There are lots of different kinds of seizures. We had to learn that with Zachary.”
Hebert is thrilled by the ambassador program’s inception, and she hopes it will continue even after the Foundation is able to resume normal levels of activity. She says it’s a chance for people who can’t normally travel to Saratoga to still be involved in their own communities.
“It’s a great opportunity to raise awareness and connect to all the communities in the counties we serve,” she said. “COVID has given us this great opportunity to think outside the box.”
Hebert strongly encourages anyone who needs services provided by the Foundation to reach out to them, especially people who are encountering epilepsy in a family member for the first time and don’t know what to do.
“Not everybody knows where to turn when faced with something l i ke that,” she said. “But the Foundation is amazing. They’re such a good resource.”
Sponsoring this year’s annual, albeit virtual, walk i s: Fingerpaint, GE, Pioneer Bank, Ellis Medicine, Stewart’s Shops, Commission on Economic Opportunity (CEO), Saratoga Hospital, Adirondack Trust, and Capitol Hill Management Services.
As a regional branch of a national organization, the Foundation is also getting sponsorship from Greenwich Biosciences, Neurelis, and Supernus.
“It’s a great opportunity to raise awareness and connect to all the communities in the counties we serve.” — Michelle Hebert