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Determined to make a difference

Man raises money to fight disease that threatens his life

BY ROBERT GIDLEY
Special to the Statesman Journal

February 22, 2008

Jim Culveyhouse used to run a small business management program, teach business classes and easily play 18 holes of golf. That was before he was diagnosed with a disease that's slowly taking away control of his muscles. Now, his speech is slurred, he wears a brace on one leg and takes his meals through a feeding tube.

One thing that hasn't changed is his determination to make a difference. In this case, he's decided to raise money for research on his affliction, amyotrophic lateral sclerosis, commonly called ALS.

"I'm looking for a cure," Culveyhouse said, "The researchers need money. The only way they're going to get money is from the general public. Somebody's got to take the lead. Who better than somebody who's got the disease?"

ALS is a degenerative neural disease that causes loss of muscular control. As the disease progresses, patients lose control over more muscles, including respiratory muscles. The disease first came to prominence when Lou Gehrig announced he had it and retired from the New York Yankees in 1939. Gehrig died three years later.

There's almost no chance that the research for which Culveyhouse is raising money will benefit him, because the disease is poorly understood, and most people die within three to five years of diagnosis. The only treatment currently available extends life by an average of three months.

But thinking about other people is how Jim Culveyhouse has always approached his life, according to Melanie Culveyhouse, his wife of almost 25 years.

"Jim is nice to everyone," said Melanie, "If he walked into a formal party, Jim would go up and say hello to the servers and thank them before he would ever talk to anybody else."

Although he tires more easily and wears a brace on one leg, Culveyhouse is still mobile and likes to play golf as often as he can.

"I used to have a scratch handicap," said Culveyhouse, who played on the Notre Dame golf team for all four years he attended. "Now -- well, now I don't even want to mention it."

Since his diagnosis, Culveyhouse's speech has slurred more and he has difficulty swallowing. He no longer eats his meals, receiving a nutritional preparation through a feeding tube directly to his stomach. He sleeps at night using a machine to keep his breathing regular.

His fundraising Web site, http://www.jimculveyhouse.com/, includes updates about his condition, the fundraising progress, and information about ALS. The goal is to raise $2 million for ALS research, and he's raised more than $250,000 so far.

"And every penny goes to research," Culveyhouse said.

To reach his $2 million goal, Culveyhouse is relying on friends from his college days at Notre Dame, from his work at Coca-Cola, and the more than 600 Salem businesses he has advised through the years. He has sent out 1,400 solicitation letters to an Oregon golf group, 400 letters to members of his golf club, and more than 400 e-mails to friends, colleagues and past clients asking for their support.

He's also planning a golf pro "shoot-out" at Creekside Golf Club on April 30 with 18 PGA professional golfers, which he hopes will generate more than $20,000 to the ALS research cause. Additional fundraising events are planned for late summer and early fall.

As a result of his efforts to raise money and awareness of ALS, the Muscular Dystrophy Association chose Culveyhouse as the Oregon state chairperson for its ALS division. One of the two organizations that targets ALS, MDA has been involved with ALS treatment and research since its early days, led by Gehrig's widow, Eleanor.

For 16 years, Culveyhouse taught business classes at Chemeketa Community College, drawing on his own experiences as the owner of the Chuckles gift shops in Salem. Until ALS forced him to retire in 2007, he was the director of the college's Small Business Management Program.

The causes of ALS are unknown. Although a small percentage of ALS cases occur in families, in most cases, there's no family history of the disease. The incidence of ALS is the same around the world, indicating there's no simple genetic or environmental cause for it.

ALS is an expensive disease to deal with, according to Marcia Bagnall, treasurer of the Oregon chapter of the ALS Association.

"The cost of caregiving is not covered by medical insurance," said Bagnall. "And a family can spend $200,000 for the costs of skilled nursing for an ALS patient. It bankrupts families."

She knows Culveyhouse because she was one of his clients. Several years ago, she consulted with him for her business, Bryce Vineyard.

"Jim was a wonderful business adviser," Bagnall said.

Robert Gidley is a freelance writer who lives in Salem.

http://www.statesmanjournal.com/apps...=2006802220319

Jim Culveyhouse

Web site: http://www.jimculveyhouse.com/



Fundraising goal: $2 million



Raised to date: $250,000



Next fundraiser: April 30, an 18 PGA pro golfer shootout at Creekside Golf Club. For information, contact Dana Londin, head professional at Creekside, 503-361-0209



Information on ALS: http://www.als-mda.org/