Show of Strength

Friday, Feb. 21, 2003 | 9:17 a.m.

Some call Lou Gehrig's disease the nice persons illness.

"The odd thing about it is that it seems to pick the extraordinary people," said Connie Bobo, executive director of the ALS Association's Nevada chapter. "I've known over 500 people who have died from ALS, and if you could pick your relatives these are the ones you would pick.

"Most of them seem to be Little League coaches, church volunteers, people who are involved in the community who are so used to giving."

An estimated 30,000 people in the United States have ALS, and about 5,000 are afflicted with it annually. In November it claimed the life of 70-year-old Richard Saxe, a retired musician in Las Vegas and father of local producer David Saxe.

"I'm particularly moved because it happened in my family," said Saxe, who produces "V The Ultimate Variety Show" at The Venetian and "Showgirls of Magic" at San Remo.

After his father died, Saxe felt compelled to help the ALS organization in Nevada, which has struggled along on a bare-bones budget since it was created in 1998. The organization assists ALS victims and their families in coping with the illness.

Saxe decided to help the group raise money by doing what he does best producing a show. The first "All-Star Las Vegas Show" will debut at 5 p.m. Saturday at The Venetian Showroom.

Entertainers who have volunteered their talents to help raise money for the local ALS chapter include Clint Holmes, Bill Acosta, Earl Turner, Ronn Lucas, Amazing Johnathan, Louie Louie, the casts of "V" and "Showgirls of Magic" and many others.

Tickets range from $50 to $100. Cocktails will be served at 4 p.m.

The show is being co-produced by Saxe, the local ALS Association, The Venetian and H & H of Nevada, owner of the showroom.

Saxe is passionate about the cause.

"My father was diagnosed with ALS a little over a year and a half ago," Saxe said. "It was right after my son was born (in July 2001)."

Saxe said his father was sent home to die.

"Doctors said there was nothing they could do," Saxe said. "It was terminal."

He said the family called the ALS chapter, and volunteers helped with such medical equipment as a motorized wheelchair.

"He started losing his ability to walk, and then he lost the use of his arms," Saxe said. "Dad passed away on Nov. 20, about 16 months after he was diagnosed."

When Saxe learned that the ALS Association in Nevada has a difficult time raising money, he decided to help.

ALS (amyotrophic lateral sclerosis) is a neurodegenerative disease that attacks nerve cells and pathways in the brain and spinal cord. When these cells die, voluntary muscle control and movement dies with them.

It is almost always terminal, usually claiming a life within 18 months to five years after diagnosis.

Theoretical physicist Stephen Hawking, author of "A Brief History of Time," may be the longest-surviving victim of ALS, which he contracted in 1965 at the age of 21.

Today the 60-year-old scientist gets around in a wheelchair and communicates through a computer.

The disease, which first was identified in medical books in 1869, killed New York Yankees baseball star Lou Gehrig in 1941 at the age of 37, less than two years after he was diagnosed.

Spread the word

Connie Bobo, whose husband, Perry, died from ALS 10 years ago at age 38, expressed gratitude for Saxe's aid.

"ALS isn't very well-known," she said. "It doesn't get enough publicity, probably because the fear factor isn't there. It's not contagious and it doesn't affect as many people as breast cancer or heart disease. And there's nothing you can do once you have it. It's always terminal."

At any given time, between 180 and 200 Nevada residents have ALS, according to Bobo.

"We provide care to about 65 at a time," she said. "And we also care for the families."

Bobo, a former real-estate broker, created the ALS Association Nevada Chapter in 1998. Initially she was a volunteer, and now she is paid for her services.

"At first I worked out of the trunk of my car," she said.

The annual budget of the organization is $500,000, all of it raised in Nevada.

Until Saxe volunteered to produce a fund-raising show, money came from three primary benefits: an all-star awards dinner and silent auction in the spring (this year on March 20); the Perry Bobo Memorial Golf Tournament in late spring or early summer; and a walk in the fall that is part of a national fund-raising event.

"Our overhead is 8 to 10 percent," Bobo said. "About 90 percent of the donated funds goes back to the community to serve patients throughout Nevada."

Services provided by the organization include home visits, giving advice on how to modify homes, lending equipment, providing support group meetings for families of ALS victims and publishing a bimonthly newsletter.

"And we are an advocate for the family," Bobo said. "We often deal with insurance companies, Social Security disability and Medicare -- things the families don't have the time or wherewithal to do."

The organization also provides registered nurses who visit the home a couple of hours a week to give the custodial caregiver a break.

"We are there for the family from the beginning to the end," Bobo said. "We are very supportive. A lot of times we are called to the home and we're there when the patient passes, and we're at the funeral -- and we provide support for the surviving spouse for two years following death."

The local chapter couldn't make it without dedicated volunteers.

"We have a core of 20 volunteers we can always count on," Bobo said.

Obstacles

Nevada has many problems that make it difficult for those who suffer from ALS, and for their families.

"For one thing, our health-care system is really bad here," Bobo said. "The illness doesn't always get diagnosed right away."

She said while the national average lifespan of a patient after he or she is diagnosed with ALS is two-to-five years, in Nevada it is only 18-to-24 months.

"We're guessing that's because the diagnosis comes so late," Bobo said.

Saxe experienced that problem firsthand. He said it took several months for doctors to determine that his father had ALS.

"At first they thought it was MS or something like that," he said.

Another problem is that Nevada primarily is a large, rural state.

"The distances we have to travel are really far," Bobo said. "Sometimes, because of the geography, we can only see two patients a day."

She said there are times when someone from the association must fly to Reno, rent a car and then drive three hours to get to a patient.

It is a job the public rarely hears about. And attaching the name of Lou Gehrig to the disease is beginning to lose its effectiveness.

"Unless you are a baseball fan or an older person, you don't remember Lou Gehrig," Bobo said. "So now we tell people it's the disease that killed (Jim) Catfish Hunter."

Hunter, a former pitcher with the Oakland As and the New York Yankees, died from ALS in 1999 at the age of 53, one year after being diagnosed.

Bobo's husband's death came even more swiftly.

"We were on a snow skiing trip and when we came home he was tired," she said. "And he stayed tired."

Seven months later he died.

"Nobody really knows about this disease," said Saxe, who wants to make the benefit an annual affair. "The ALS Association has very limited funds and so it's hard to get the word out. This event means a lot to them." It doesn't get enough publicity, probably because the fear factor isn't there. It's not contagious and it doesn't affect as many people as breast cancer or heart disease."