S.C. Epilepsy Foundation closes its doors

The Epilepsy Foundation of South Carolina shut down last week, a victim of fundraising woes and state budget cuts.

"We're not the only nonprofit having problems," said Neal Coyle, chairman of the foundation's board of directors. "I suspect we will not be the only ones closing our doors."

The foundation's two employees - director Barbara C. Brothers and outreach coordinator Erin P. Stone - spent Monday packing boxes at the office off Bush River Road. They didn't finish their jobs, but their jobs are finished.

"That's the worst part," Brothers said. "There's no one place for people with epilepsy to turn to now."

The local phone number will be answered by the Epilepsy Foundation of America's main office in Maryland. Workers there can suggest which groups or state agencies might be able to help those with epilepsy or their families locally, but they won't know the lay of the land.

Kimberli Meadows, a spokeswoman for the national foundation, couldn't recall another affiliate that has had to shut down in recent years. But a May survey by nonprofits watchdog GuideStar found 8 percent of nonprofits felt they were in imminent danger of closing because of financial problems.

The S.C. Association of NonProfit Organizations has received many questions this year about how to close an organization, said president Mason Hardy. While he couldn't name another organization that has closed, he was sure there have been others. There is little incentive for them to tell authorities when they close.

Brothers and Stone spent part of Monday explaining the situation to callers while they cleaned out their office.

Epilepsy is a brain disorder that leads to seizures. An estimated 65,000 South Carolinians have epilepsy, and about 3 percent of the population will have epileptic seizures during their lives, according to the foundation. With proper treatment, about 70 percent can lead normal lives.

The seizures themselves can be devastating, and the stigma unfairly attached to the disorder can be just as difficult to overcome, said Stone, who has epilepsy.

"I started as a volunteer at our camp, and when I talked to kids, I could see it made a difference in their lives," said Stone, who left a comfortable corporate job two years ago to work for the foundation. "Now I can see that when people were educated about seizures, it went from a panic situation to something they can deal with."

In addition to steering people to public agencies or private groups that help epileptics, the foundation performed an important education role. It provided materials or classes for school officials, law enforcement officers and employers explaining how to handle seizures.

The local foundation formed in 1977 and, at its peak, employed 5 1/2 people. The nonprofit group received funding from state and federal agencies, the United Way, grants and public donations.

But those sources began to shrink several years ago. Changes in the way the local United Way allocates its dollars hurt nonprofits that didn't have broad agendas, Brothers said.

About the time of the United Way cuts, the foundation started receiving a $75,000 state allocation to pay for education programs. But that ended with state budget cuts last year.

A change in federal regulations of donations by pharmaceutical companies two years ago dried up another important revenue source, Brothers said.

Then the economy tanked, and individual and corporate donations sank with it. As funding dropped, two employees were let go in the spring, and the foundation ended its annual summer camp program.

The remaining two employees gradually were spending the majority of their time trying to raise money rather than helping people with epilepsy.

"It's not good use of the funds we are given when that money is just going to raise more money," Coyle said.

So the board voted in September to close the doors.

Everyone involved hopes the foundation will be resurrected when the economy improves. But for now, people needing help will have to maneuver the bureaucratic maze on their own.