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When Janice Gay found out her daughter had epilepsy in the 1970s, she discovered information about the neurological disorder was lacking. But with a mother”™s determination to help her child ”“ and in the process help herself and other parents learn how to cope with the disorder ”“ she founded the Epilepsy Society of Southern New York and became its executive director, all within three years of her daughter”™s diagnosis.
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While funding has been dwindling due to New York”™s shrinking nonprofit money pool, the society has helped hundreds of clients who have sought help as well as their families who need to understand how to cope with a disorder that has no cure.
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The ESSNY moved to the Jewish Community Center in Nanuet last year, giving it more room to provide life-skills treatment and support. Its collaboration with Capabilities Partnership, which was founded in 2006 to assist those affected by a broad spectrum of disabilities including autism, has not only allowed it to help clients with epilepsy but expand service to those who suffer from TBI (traumatic brain injury.)
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After 33 years, Gay decided it was time to retire. In June, she will turn over the reins of the Epilepsy Society and Capabilities Partnership to Anna Vero, chief financial officer, and Kim Egan, chief clinical officer. Gay”™s position as executive director will remain unfilled with Vero and Egan taking over Gay”™s duties in addition to their own.
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“When Janice told us she planned to retire, we started to recruit for someone to take her place,” said Vero. “But the reality is, we realized we couldn”™t afford to hire anyone to take Janice”™s job. Funding cuts from Albany are not slowing down and we are sure they are not over. Although we do have fundraisers, they aren”™t going to be enough to cover our costs.
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“Paterson”™s proposed cuts to non-profit organizations are going to hurt,” said Vero. “Almost 90 percent of our funding comes from the state. We don”™t know what Paterson is going to do.
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“It was fortuitous that Janice decided to retire when she did. It means that, even though our workloads will increase, we won”™t have to let anyone on staff go or cut back on services. We have no clue what Albany has in store for non-profits, no matter how vital to the community.
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“Our goal is to help people with epilepsy lead independent lives, and we expect our work with men and women coming back from Iraq and Afghanistan is going to increase when it comes to our TBI portion of the program,” said Vero.
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“In addition to helping those with epilepsy learn to live with seizures ”“ how to detect if they are going to have one and how to mitigate them as best as they can ”“ are part of the society”™s goals,” said Egan.
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“It”™s a misunderstood disease, and it can be frightening for someone who witnesses a seizure,” Egan continued. “We have had parents come in to us whose children have been diagnosed with epilepsy, and they want us to come into the classroom to explain it to the other children. They don”™t want their child ostracized because of an illness they have no control over.”
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Although there is no cure for epilepsy, many are able to control seizures through drug therapy. “Researchers are making strides,” said Egan, “but they have a long way to go. There are so many other life-threatening diseases out there ”“ and they all need funding that is shrinking as we speak.
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“No one knows when epilepsy will strike. You can be a child or an adult and the seizures can be frightening to those who have never witnessed one.” Egan said a new program that trains dogs to detect a seizure coming on has been a “remarkable” stride for people dealing with the illness.
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The Epilepsy Society of Southern New York serves nearly 250 clients on a steady basis, in addition to special group meetings and programs, teaching both independent-living skills and job skills and being a source of support for those with epilepsy and their loved ones.
“We are sad Janice is retiring, but she”™s given 33 years of her life to this mission and brought us from her kitchen table to a community service center where people from three counties (Rockland, Westchester and Orange) can come for help. We”™d rather work harder than have to cut our staff or see our clients lose valuable services,” said Vero and Egan.
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Gay said she is confident she is leaving the agency in capable hands. “Anna and Kim have a combined 20 years of experience.”
For more information on the Epilepsy Society of Southern New York, visit www.learnaboutepilepsy.com
