Using the combined power of art and nature, Kyle Adamkiewicz is on a mission to cure epilepsy, a disorder he has lived with since childhood.
Since October 2022, Adamkiewicz has been painting and decorating seashells he finds along the sandy shore of New Jersey with heartfelt messages in search of a cure. He places the shells along the state’s seaside boardwalks, seeking to inspire strangers toward the cause.
A longtime patient of NYU Langone’s Comprehensive Epilepsy Center, one of the largest epilepsy treatment programs in the nation, Adamkiewicz, 33, underwent a procedure to implant a responsive neurostimulation (RNS) device in April. Peter A. Rozman, MD, director of adult epilepsy surgery, was part of a team that implanted the device.
About 30 percent of epilepsy patients do not respond to seizure medicines, according to the Epilepsy Foundation. The RNS device, which is surgically implanted near the source of the seizure activity, monitors brain waves to detect unusual electrical activity. A small burst or pulse of stimulation is delivered to counteract a seizure and prevent it from spreading. It can be adjusted and tailored to each patient’s unique neurology.
“RNS has the capacity to record brain activity in the form of electrical waves that detect when the seizures start, so it can deliver an impulse to the brain at that time, with the goal of aborting the seizure,” says Dr. Rozman. “Over time, people see more and more improvement in their seizures.”
Adamkiewicz’s father, Charles, a Navy veteran and retired firefighter, says Kyle had always wanted to become a Navy SEAL, but his condition ruled it out. Still, his dad has helped him travel coast-to-coast, touring military facilities and even training with SEALs on Virginia Beach and in California. His mom, Laurie, has been a champion of epilepsy advocacy, by his side while helping him collect, paint and distribute his colorful seashells.
“He’s a very outdoorsy person,” Charles said. “He loves the beach and the ocean. After his condition worsened, he couldn’t work, and so now his mission is to get the word out to find a cure.”
To date, the RNS device has reduced Kyle’s seizures significantly and allowed him to keep his focus on the mission to help people with epilepsy.
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