Four years ago, the Epilepsy Foundation of Northeastern New York organized a fundraising walk through Saratoga’s Spa State Park, hoping to draw about 100 people. Organizers were blown away by the response.
“Our first year we had 500 people registered and we made (about) $50,000 so we were thrilled,” said Susan Kaczynski, director of development for the Epilepsy Foundation.
Now, they’re hoping to top past performance on Sunday, Sept. 9, for the 4th Annual Saratoga Stroll for Epilepsy, with a goal of 800 walkers.
The foundation serves 22 counties in upstate New York from Sullivan and Ulster Counties to the Canadian border and provides services to more than 200 families affected by epilepsy. It also hosts four other fundraisers every year including walks, galas and bowl-a-thons. The proceeds are used locally.
The walks account for about 25 percent of the foundation’s $1.8 million annual budget with the remaining 75 percent coming from grants, donations and state funding.
Kaczynski said the Spa State Park event began as a way to raise awareness to the fact that the foundation serves those in the northern counties like Saratoga. She added the event’s success has been deeply satisfying to see.
“Walks always do a great job, it brings people together. … We started having the stroll in Saratoga so we had more of a presence outside of Albany,” said Kaczynksi.
Tami Furlong of Delmar has been participating in the Saratoga Stroll for Epilepsy since it started and said she is grateful for all the foundation does. She’s also co-chairwoman for the event this year.
Furlong’s son Joey, 9, was diagnosed with epilepsy when he was 1.Through a service coordinator with the foundation, Furlong said she was able to get a pulse oximeter, a device that monitors Joey’s oxygen level while he sleeps. An alert sounds to Tami if he isn’t breathing or if his oxygen level dips too low, signs that he’s seizing. Before getting the monitor, she would get up and check him several times a night.
“It’s like a weight has been lifted, and that we’re not doing(this) alone,” said Furlong. “We have a network of people who know about what to do.”
Ian Boegel is 8 and lives in Delmar, not far from the Furlongs. He was three when he was diagnosed with epilepsy and his family has also been involved with the foundation. The Boegels met the Furlongs through the foundation and the boys have become friends.
“They’re partners with all of our struggles,” said Michelle Boegel, Ian’s mother and co-chairwoman of the stroll along with Furlong. “When there’s news with Ian I tell my husband, then my parents, then Tami and Lori Kidd, our service coordinator. … We couldn’t have done (anything) without them.”
Epilepsy commonly produces seizures and can affect people in a variety of other ways. Demographically, the disease isn’t particular and affects a wide range of people. Worldwide, approximately 50 million people are afflicted, or about 2 percent of the population.
“Epilepsy can affect anyone at any age at any time. It’s more prevalent in the young and the elderly but some people are born with a seizure disorder, others may have a traumatic brain injury or accident and may develop epilepsy because of that,” Kaczynksi said.
Services provided by the foundation include counseling, referrals and support groups. It also helps educate communities by giving first aid training and education at schools, for instance.
“We go into the schools to educate the students, teachers and school nurses about epilepsy and what to do in case someone has a seizure. A lot of our parents will ask us if their child has epilepsy and they have a new teacher … to come in and do training,” said Kaczynski.
Pre-registration is preferred for the stroll, though registration is available starting at 10:30 a.m. on the day of the event. The walk steps off at noon.
For more information on epilepsy and the foundation, visit www.epilepsyfoundation.org/efneny.
