From Stigma to State Law: Kincaid’s Fight for Epilepsy Awareness in North Carolina Audio
By Antionette Kerr/Davidson Local
For years, Toney Kincaid has carried both the visible and invisible weight of epilepsy. He remembers working long shifts as a machine operator, even after suffering a brain injury. He pushed himself, even when doctors warned he was one stroke away from disaster. Eventually, the toll cost him his job.
Representative Keith D. Kidwell (Left) and Toney Kincaid (Right).
“I sat six years in my yard, and no one came to see me,” Kincaid recalled. At one point, he was forced to sell his own life insurance policy just to survive. “I had to sell my life insurance policy so I wouldn’t lose everything. I don’t want to see that happen to anyone else.”
Despite those struggles, his voice has reached far beyond North Carolina. Kincaid has been recognized as a world ambassador for epilepsy, chosen to represent the fight for awareness on a global stage. Yet he admits he isn’t traveling right now—without the money to support those opportunities, his mission remains local, focused on building awareness and dignity here at home.
And that mission has paid off. After six years of relentless advocacy, Kincaid saw victory this year when lawmakers passed the Seizure Safe Schools Act, also known as Sam’s Law. House Law Bill 172 Samantha Rose
He doesn’t brag about the accomplishment, but he doesn’t have to. Getting a bill passed in Raleigh is no small feat—especially for someone who isn’t backed by powerful lobbyists, but by lived experience and a handful of determined advocates. “A politician does not want their names tied to this,” Kincaid admitted. The stigma, he explained, has often kept leaders from attaching themselves to the cause.
Still, he found allies. Among them, he credits locally Wendy Sellars and a small but committed circle who stood with him when others would not. He also found hope in unexpected places. Paul’s Chapel in Lexington not only welcomed the Epilepsy Association of North Carolina into a beautiful office space, but also sponsors fundraisers to keep the mission alive. “They took us in when others turned away,” Kincaid said.
The new law requires every school in North Carolina—public, charter, regional, and even private—to train staff, provide seizure education, post seizure first aid guides, and ensure at least one person in each building can administer seizure medication. Schools must also develop seizure action plans for students and display posters in high-traffic areas.
For Kincaid, it’s not just a policy win—it’s personal. “This law represents a chance for children with epilepsy to be seen and supported, rather than silenced,” he said.
Epilepsy Awareness
Epilepsy affects more people than most realize. Roughly 1 in 26 people will develop epilepsy during their lifetime. That doesn’t mean they currently have it—but at some point in life, seizures can become a recurring reality.
It can begin earlier than many imagine. Some babies have seizures while still in their mother’s womb. Others may not experience them until childhood, after a head injury, or even late in life. In the United States, about 3 million adults and 470,000 children live with epilepsy. Worldwide, more than 65 million people are affected.
Yet despite those staggering figures, epilepsy is often called a “hidden condition.” Many people don’t talk about it, and many others don’t understand it.
That lack of understanding often creates barriers that go far beyond school walls. In North Carolina, many people with epilepsy cannot legally drive depending on their diagnosis and seizure activity. That restriction makes transportation one of the greatest challenges for daily living, forcing many to rely on volunteers for work, appointments, and independence.
“The need is real,” Kincaid said. “Even though I can drive, many in our community cannot. We need people willing to support, listen, and learn how to help with transportation.”
From Silence to Support
Kincaid’s fight has never been just about legislation. It’s about changing hearts and minds. He knows laws can mandate training and policies, but they cannot erase stigma without community support.
That’s why he continues to tell his story—the brain injury that almost ended his career, the years of loneliness, the moment he had to cash in his life insurance just to survive, the lifeline of churches like Paul’s Chapel, and the hope he sees in each step forward.
“This is about more than schools,” he said. “It’s about building a community where people with epilepsy can live, work, worship, and belong without fear or shame.”
With the passage of the Seizure Safe Schools Act, Kincaid believes the state is one step closer to that vision. And for the thousands of North Carolinians who live with epilepsy—many quietly, many hidden—his persistence means they are one step closer to being seen.
How You Can Help
Volunteer to drive Epilepsy community members who cannot legally operate a vehicle.
Learn seizure first aid—simple actions save lives.
Challenge myths and offer inclusion in schools, workplaces, and churches.
Support the Epilepsy Association of North Carolina, which provides training and advocacy across the state.
For more information, visit Epilepsy NC on Facebook!
