Ride For Life: Professor with ALS starts health-care organization

The Associated Press State & Local Wire January 27, 2003, Monday, BC cycle SECTION: State and Regional LENGTH: 503 words HEADLINE: Dying professor starts health-care organization DATELINE: KEENE, N.H.

A Franklin Pierce College business professor diagnosed with Lou Gehrig's disease has a unique approach to handling his diagnosis: He founded a business.

Stephen M. Smith of Keene, 55, was diagnosed in the summer with amyotrophic lateral sclerosis, or ALS. About 30,000 people have the disease nationwide.

Smith, who noticed he was slurring words, was told to expect several years of growing paralysis as the disease attacks nerve cells in his brain and spinal cord, leading to death.

With the help of students and friends, he ended up founding the Stephen "Hurricane" Smith Fund Inc., a nonprofit company that mixes multi-level marketing with charitable giving. Using an extended network of volunteer fund-raisers, the business seeks to raise $200,000 for Smith's care. Then, after Smith dies, the plan is to keep raising money for ALS research.

"I'm trying to do as much as I can, while I can," he said.

Smith hopes the fund can help change the way people deal with the financial and emotional toll of terminal illness.

"It's a very innovative idea," said Dr. Jeffrey A. Cohen, the neurologist who treats Smith at Dartmouth-Hitchcock Medical Center in Lebanon. "Have I seen anything like this? Not quite."

Smith decided in September to tell his students about the diagnosis. Some already could tell something was wrong.

"I thought at first he had a very bad cold, because his speech was off," said Denise Mayfield of Swanzey, the parent of two teens who took night courses while working as a sales representative during the day. She graduated in December with a master's in business administration. "Then it never got better."

Mayfield, who wanted to find ways to help, said Smith's teaching style resonated with her and other classmates, describing him as energetic, funny and sensitive to their needs.

She and several other students came up with a plan for an organization dedicated to motivating and organizing the fund-raising efforts of hundreds of people.

"It's not just a mass of people saying, 'Oh (bleep), I'll send 10 bucks,"' Smith said. "It's people using their business skills and their marketing skills."

The extensive list included friends, family, teaching colleagues, business contacts and former classmates. He got about 100 volunteers, each of them responsible for raising at least $2,000.

So far, less than $5,000 has been raised.

Projects discussed include broadening the fund-raising network to help other individual ALS patients and donating money to the Northeast ALS Consortium, a group of hospitals -- including Dartmouth-Hitchcock in Lebanon -- working for better ALS treatment.

It's still not known what causes ALS. Barring a breakthrough, Smith has pretty much accepted that he has only a few years left. With a grin, he said this wasn't the way he expected to go.

"I always thought I would die racing to save an infant, passing it to the mother as a truck runs me over."

On the Net:

Smith fund: http://www.stephenhurricanesmithfund.org