Epilepsy Awareness Month: Local Advocate Toney Kincaid Calls for Action
A MESSAGE TOO LONG UNHEARD:
For more than 50 years, Toney Kincaid has been raising his voice for a community that often gets pushed to the margins. He’s lived with epilepsy for over half a century, and he’s spent just as long educating, comforting, and fighting for visibility in a world that still whispers about the condition instead of speaking plainly.
“I have lived with Epilepsy for more than half a century. I have fought for awareness, dignity, and respect for our community,” Kincaid said in a message shared with Davidson Local. “Today, North Carolina has a Seizure Safe Schools Law—but almost no one knows it exists. That silence is heartbreaking.”
Despite progress at the state level, Kincaid says awareness remains painfully low. During Epilepsy Awareness Month, he reached out widely—hoping, at minimum, for acknowledgment.
“I reached out to our Governor for a Proclamation for Epilepsy Awareness Month. No response,” he said. “I contacted news stations. I was told, ‘No one wants to hear about Epilepsy.’ Month after month, I see causes lifted—but never ours.”
Davidson County’s Hidden Numbers
Epilepsy isn’t rare. It’s simply overlooked.
According to CDC-based estimates, about 1% of adults in the United States live with active epilepsy. In Davidson County, that translates to roughly 1,780 residents—neighbors, classmates, coworkers, and family members navigating a condition that can be unpredictable and, at times, deadly.
Kincaid provided additional context for the local impact:
Davidson County population (2024): approx. 177,809
Estimated adults with active epilepsy: ~1,780
Estimated SUDEP deaths per year: 1–2
SUDEP—Sudden Unexpected Death in Epilepsy—is rare but devastating. The national estimate is about 1 in 1,000 people with epilepsy per year, a risk that rises with uncontrolled seizures.
When the county’s numbers are reduced to reality, Kincaid says, it hits harder: behind every statistic is a face, a family, and a lifetime of trying to stay safe, stay seen, and stay alive.
“We Are Not Invisible.”
“We are 125,000 strong in North Carolina,” Kincaid said. “We are not invisible. We matter. And we deserve to be seen, heard, and supported.”
It’s not just about recognition, he adds—it’s about survival. Education saves lives. Awareness reduces stigma. And simple steps like making school staff seizure-trained can change outcomes for children who don’t always have the words—or the time—to advocate for themselves.
Kincaid, now older, says the urgency only grows.
“I pray change comes in my lifetime. I am getting older,” he said. “But I will never stop speaking up—for every child, parent, and person living with Epilepsy.”
A Call to the Community
His message ends with a plea that doubles as a challenge:
“Let’s make Epilepsy Awareness Month known. Let us make our voices impossible to ignore.”
He thanks Rev. Aaron Long at Paul’s Chapel Evangelical and Reformed Church in Lexington, NC for being on of the few to answer his calls. Long is passionate about family, faith, his congregation, and sharing stories that strengthen community. Over the past few Sundays, you’ll find his reflections, insights, and local perspective in Davidson Local.
For a Kincaid, a man who’s spent fifty years refusing to be quiet, it’s a call that carries weight. Davidson County’s numbers are not small, and the stakes are not abstract. Kincaid’s fight is a reminder that awareness isn’t a luxury—it’s a lifeline.
And this time, he shouldn’t be raising his voice alone.
