The founders of a student group fighting to raise awareness about epilepsy say their new status as a non-profit will allow them to expand the scope and impact of their organization.
Kaitlin Hardy ’12 and Dan Nicholls ’11, who started FACES in spring 2010, said they are working to open a national office for their group and to spread chapters to other college campuses. FACES — which stands for Facts, Advocacy and Control of Epileptic Seizures — organizes a wide range of activities to both spread awareness about epilepsy and help individuals living with the condition.
“We wanted to erase [misconceptions] and say this is something we can talk about,” Nicholls said.
According to Hardy, non-profit status will enable FACES to apply for grants from sources outside of the University. Grants will allow the group to “get real money to fund our organization,” she said.
“This is what it’s going to take to expand nationally,” Hardy said. “It’s kind of like we’re in the big leagues now.”
Although the organization started with five people, Hardy said, it has since grown to include more than 50 members.
According to Hardy, FACES seeks to give people with epilepsy an equal chance to achieve their goals.
“We want to make sure that people with all disabilities are given the opportunities to succeed,” Hardy said.
Both Hardy and Nicholls battled epilepsy themselves.
Hardy said she began having seizures once or twice a week during her sophomore year at Cornell. She had to increase the amount of medication she was taking, which caused her stomach lining to deteriorate and made it difficult for her to keep food down.
“I wanted to stay on campus, but I had to go home on medical leave,” Hardy said. “After I went home, I felt better after two or three weeks and the seizures stopped.”
Nicholls began having seizures at about the age of 16. He said that in the early stages, his epilepsy was not yet under control — forcing him to rely heavily on others at an age when he was trying to gain independence.
“The most difficult part of the whole experience was that there was no one to talk to about my frustrations, feelings and health issues [who] could relate to what I was going through,” Nicholls said.
These personal challenges, Nicholls and Hardy said, led them to their work with FACES.
Beyond their work at Cornell, members of FACES also volunteer at elementary schools, discussing epilepsy and their research, Nicholls said. He said that FACES’ epilepsy education program has been particularly popular among schools in Ithaca.
“[Hardy] has been going to these schools and talking about the neuroscience behind [epilepsy],” Nicholls said. “She runs mini-labs now. She shows these kids how it works because it really gets them interested.”
“I really want to get the next generation of advocates excited,” Hardy said.
In a program called Seize the Day, FACES matches students with epilepsy with mentors to help them manage difficulties associated with their condition, such as the side effects of the medication they use to treat epilepsy.
“You can relate to these kids and see them brighten up a little bit when they know they can talk about [their epilepsy], knowing that the person they’re talking to has gone through the same thing,” Nicholls said.
Hardy echoed this sentiment, saying, “We’re taking epilepsy and making it normal.”
Hardy said she often felt uncomfortable discussing her epilepsy with others prior to starting the organization.
“I still feel like there’s a negative stigma about epilepsy, and I don’t know why that should have to happen,” she said.
The organization has not only positively influenced the way the community views epilepsy, but also personally affected Hardy and Nicholls, they said.
“I’m going to be carrying this with me forever outside of Cornell,” Hardy said. “I want this to be a national organization; I want to get people involved; I want to make things better.”