5/11/2005, 6:23 p.m. ET
By JEFFREY McMURRAY
Copyright 2005 Associated Press.

WASHINGTON (AP) — Using a computerized voice box to talk, a 23-year-old Alabama man offered Congress a real face Wednesday to ALS, or Lou Gehrig's disease, the devastating nerve disorder that kills most of its victims less than five years after they're diagnosed.

Appearing in front of the Senate Appropriations Committee, Eric Obermann, of Huntsville, said he first noticed indications of the disease in 2000 as a college freshman at Georgia Tech when he developed weakness in his tongue and mouth, making it difficult to play his clarinet. Doctors diagnosed him with ALS and gave him three to five years to live.

"I felt as though I had just received a death sentence," Obermann said. "Mom took me out to eat at one of our favorite places, but feeling sick to our stomachs, neither of us could eat. We just looked at each other, wondering what had just happened to us. We were in shock."

Sitting in a wheelchair and using a neck brace because his neck can no longer support his head, Obermann told of the rapid progression of the disease in his body.

His speech became unintelligible and he couldn't move his hands, making even sign language impossible, Obermann said. An aspiration of fluids from his mouth gave him repeated bouts of pneumonia, forcing doctors to remove his voice box and trachea two years ago. He now uses the computerized device, controlled by his toes, and it took him several hours to compose the less than 10-minute statement he gave Congress.

"Two things ALS cannot take away from me are my mind and my spirit," Obermann said. "Despite the radical changes my body has undergone, I am still the same guy inside. I am actually much tougher mentally and have learned to appreciate many things I used to take for granted."

Sen. Richard Shelby, an Alabama Republican who presided at the hearing, invited Obermann to tell his story as a way to underscore the need for federal funding for the disease, which attacks the brain's motor neurons and the spinal cord, causing a loss of muscle control, paralysis and eventually death.

Former major league pitchers David Cone and Tommy John also testified about their charity work searching for a cure for ALS.

"There is so much basic research that must first be done if we are to find the cause and cure of ALS," Shelby said. "I also believe that we must continue to work to find immediate opportunities to slow its progression and provide patients with every option available."

Story Landis, director of the National Institute of Neurological Disorders and Stroke, said 5,000 new ALS patients are diagnosed in the United States each year, but because so many die from it, less than 20,000 are suffering from it at one time.

Landis said only one drug has been found to treat the disease, and it isn't very effective. More money is needed for clinical trials, she said, in hopes of finding a cure.

"It's always depressing when you look at a disease as devastating as this one to have not made further progress," Landis said.