Monday, May 09, 2005
By STEVE DOYLE
Times Staff Writer
© 2005 The Huntsville Times

Before Lou Gehrig's disease stole his voice and wrecked his body, Eric Obermann dreamed of becoming a computer scientist.

Five years later, the 23-year-old Grissom High School grad is poised to become something much more important:

A hero.

Wednesday morning, some of the most powerful people in Washington will be listening as Obermann tells his story to the U.S. Senate's Health Appropriations Subcommittee.

It promises to be a dramatic scene: Obermann rolling his electric wheelchair to the front of a hushed Senate meeting room, using the only part of his body that still works - his right toe - to fire up his talking computer.

Obermann hopes his 10-minute speech, which took about 30 hours to write and program into the computer, convinces the Senate to boost the National Institutes of Health's research budget for Lou Gehrig's disease, also known as amyotrophic lateral sclerosis, or ALS.

"It's a great opportunity," Obermann said through his computer Thursday at his parents' home on Green Mountain. "It gives (ALS victims) everywhere hope that there may be more money provided to search for a cure."

In 2000, the last time the Senate heard from ALS patients, the federal ALS research budget jumped almost 30 percent, from $27.5 million to $34.9 million.

Obermann's father, Stuart, and Huntsville real estate agent Bonnie McDonald, whose husband, Jimmy, died of ALS, deserve much of the credit for arranging this week's hearing.

A year ago, they scored a meeting with U.S. Sen. Richard Shelby, R-Tuscaloosa. Stuart Obermann brought a photo album chronicling his son's battle with the fatal, fast-moving neuromuscular disorder.

Once nimble enough to march in the Grissom band, Obermann is what people in ALS circles call "locked in," able to move only his right foot and eyes. Surgeons removed his voice box on June 1, 2002, during an emergency laryngectomy. He breathes through a ventilator.

Shelby, a member of the Senate Subcommittee on Labor, Health and Human Services and Education, agreed to push the panel's chairman, Sen. Arlen Specter, R-Pa., to hold a hearing on ALS.

Steve Gibson, vice president of government relations for the ALS Association, said Obermann's testimony will show that Lou Gehrig's disease is not an old-person's illness.

While it most often strikes people in their 40s or 50s, Obermann was diagnosed during his sophomore year at Georgia Tech.

"Eric will be able to raise the level of urgency to a level we have not seen," Gibson said last week.

Wednesday's hearing, the culmination of the nonprofit ALS Association's annual Advocacy Day, will also feature "The Young and the Restless" star Kate Linder, whose brother-in-law has ALS, and former pro baseball pitchers David Cone and Tommy John. John played for the New York Yankees alongside Jim "Catfish" Hunter, who died of ALS in 1999.

Some 500 ALS patients and their families are expected in Washington for this week's events. The Senate hearing may be televised on C-SPAN.

For Obermann and his parents, just getting to Washington is a Herculean effort.

Their van is a rolling intensive care unit stuffed with everything Obermann needs: a machine to lift him out of bed in the morning; another to suction mucous that pools in his throat; a food pump; a shower chair; extension cords; and spare batteries.

Obermann's mom, Marcia, a registered nurse, plans to take a resuscitation kit into the Senate room in case his ventilator quits during the hearing.

She's also bringing one more thing: a sports coat Obermann bought a couple of years ago but has never gotten to use.

"I may have to cut it down the back," she said, "but he's going to wear it."