The US government spends billions of dollars each year on medical research into dozens of diseases. About $8 million of that funding has been allocated to epilepsy, a chronic brain disease that causes sometimes-paralyzing seizures. It affects more than 2.5 million Americans and an estimated 50 million people worldwide.
Hannah Booth,14, was diagnosed with epilepsy five years ago. She says because she is personally concerned about the issue, she came all the way across the country, from Los Angeles to Washington to talk with members of Congress.
"I wanted them to know that epilepsy is hard to deal with," she says. "We need the money they are cutting because… it's not that much to them, but it's a lot to us." Hannah and her parents were among several hundred families that participated in a lobbying effort last month, hoping to keep funding for epilepsy research in the federal budget.
Eric Hargis, President of the Epilepsy Foundation, says just one team is working on a treatment or a cure. "There is only one federal program that addresses the needs of people with epilepsy through the Centers for Disease Control and Prevention," he says. "It's a great program, but unfortunately, the President's budget completely zeroed this out, eliminated this program completely."
Hargis says the young people in his group's Kids Speak Up program plan to keep speaking up.
"What's great about this program is that it's on-going," he says. "Certainly, the pivotal point is the visit to Capitol Hill, but you know, all politics are local. So, when these families get back to their districts, they've made the commitment to stay in touch, to visit the Congress member's home office, make sure that the importance of this to the epilepsy community is front and center with our elected officials."
In addition to the political goal, Eric Hargis says this campaign has a broader objective: educating people about epilepsy.
"Epilepsy is the oldest condition known to humankind," he says. "It was first described by the Babylonians more than 3000 years before Christ. It's still surrounded by mystery, ignorance and fear."
Hargis says a survey of 20,000 American teenagers revealed they knew little about the disease. "What they knew about epilepsy was frightening. Almost half thought it could be contagious. Almost half thought it was a mental illness, and two-thirds wouldn't date someone with epilepsy," he says, noting that it takes courage for people like Hannah to talk openly about living with epilepsy.
However, Hargis says, as more young people with epilepsy - especially celebrities - open up and speak about it, the stigma and discrimination against epilepsy patients will end.
"There are many celebrities who have epilepsy, but an awful lot who haven't disclosed it," he says. "And we understand, because of the discrimination. Often times, if you talk about epilepsy and you are a celebrity, then your job offers just stop coming."
One of the celebrities who's joined the Kids Speak Up campaign is Chanda Gunn, goaltender for the U.S. Olympic Women's Ice Hockey team. The 26-year old bronze medalist says epilepsy doesn't stop her from pursuing her dreams.
"I was diagnosed with epilepsy when I was 9 years old," she says. "I
was a competitive swimmer. I think I was a little too young to understand what was going on, but I wasn't allowed to swim because my epilepsy wasn't under control and the pool wasn't a safe place for a little child with seizures to be. So, I tried new sports. That's how I started playing ice hockey. My seizures got under control. So I was able to have success."
John Pellock, a neurologist at Virginia Commonwealth University, says the athlete's openness about her lifelong battle with the disease is inspiring. "I think Chanda is just a perfect example of one who was diagnosed correctly and was placed on the proper medication," he says. "People with epilepsy today have a lot of options for their treatment, including of course medications, but also surgeries and other techniques.
And to expand those treatment options, epilepsy advocates say, it's important that research funds be kept at the same level as in the past, if not increased. They hope Congress will remember
their message when it passes the budget for next year