Springfield banker Brian Fogle's mother died of it. Nurse Marilyn Taylor's husband did, too. So did retired music teacher Elaine Townsend's husband. They were victims of the still-mysterious, indiscriminate disease, ALS, or amyotrophic lateral sclerosis.

Researchers continue to sift through clues to the cause of the disease, including what appears to be a high accumulation of cholesterol-like fats in cells of many ALS victims, said Springfield neurologist R. Scott Duff.

Scientists are experimenting with a chemical they think might prevent familial (within families) ALS, which accounts for up to 20 percent of patients.
"It suggests some very real hope for the future," he told about 30 ALS volunteers at a recent fund-raising event kickoff.

The family members, friends and co-workers of people affected by ALS are gearing up for a walk to raise money for services and research.

They're raising pledge money and organizing walking teams for the Oct. 19 "Walk to D'feet ALS," The three-mile walk will circle Phelps Grove Park in central Springfield.

The city's first ALS walk last year attracted more than 600 walkers and raised over $50,000.

"We don't have a goal this year, but we'd like to see 1,000 people there," said Kim Goble, awareness and development coordinator for the area ALS office.

One of those who could benefit from future discoveries is 12-year-old Tyler Hall, who his mother, Terry, said is the only known youth with ALS in the area.

Tyler was diagnosed with an infantile form of ALS at birth, she said.

"Any research will also help these children," Terry Hall said.

ALS, also known as Lou Gehrig's disease, is a progressive fatal neurodegenerative disease that attacks the motor neurons, making even the simplest movements - walking, speaking, gesturing - nearly impossible.

There is no cure. Most people who get it live two to five years after it's detected.
People with ALS generally are paralyzed in the later stages of the disease. In most cases, however, the mind is unaffected.

The disease was named for New York Yankees first baseman Lou Gehrig, who played in a record 2,130 consecutive games before ALS forced a premature retirement in 1939.

Some 30,000 people are living with ALS today in the United States, and 5,600 new cases are diagnosed each year.

For most, it starts primarily with pain in the hands and is often misdiagnosed as carpal tunnel syndrome, Goble said. People usually are diagnosed between age 40 and 70.

About 60 people in central and southwest Missouri have ALS, creating a "cluster" effect that doctors are curious about, Duff said.

Researchers believe many people could be exposed to the disease somehow, but unknown factors trigger ALS in susceptible people, he said. Triggers could include exposure to something during the Gulf War, he said.

A cluster seems to exist in Aurora near where high levels of lead exist from old mining operations, he added.

"They're pursuing every trend they find," Duff said.

Brian Fogle, of Great Southern Bank, is corporate chairman of this year's walk.

Corporate fund-raising so far this year is $1,000, already surpassing last year's $500 amount, he said.

Fogle's mother died about 15 years ago as a result of ALS, he said. Fogle compared the impact of diagnosis to the shock of Sept. 11, 2001.

Family members and patients remember where they were and how they felt when they heard the diagnosis.

"Life became much more clear," Fogle said. Trivialities went by the wayside.

With a diagnosis of ALS, he said, "There is anger and despair, but there's also hope. There's a lot we know about the disease, but we don't know what's possible.

"My No. 1 goal is that all patients living and passed on are represented at this walk," Fogle said.

Marilyn Taylor agreed. She and her team will walk for her husband, Jeff, who died Memorial Day 2001.

"It's not so much about how much money we raise, but to raise awareness," she said.

Join the walk

The Walk to D'Feet ALS is a three-mile fund-raising walk scheduled Oct. 19 at Phelps Grove Park in central Springfield.

Registration begins at 10 a.m.; the walk begins at 11 a.m.

The ALS Association is signing up walking teams of 10 people, with a goal to raise $1,000 in pledged donations per team.

For more information about the walk or to create a team, call 886-5003.

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