Enjoying each sunset

Bryce Alderton

Nick Scandone strode carefully into a hallway Wednesday at the Balboa

Yacht Club with the afternoon sun casting an opaque glow that

brightened the grin stretched across his face and the Hawaiian shirt

nestled on his shoulders.

The 38-year-old strolled these grounds many times as a junior

sailor and successfully navigated through the first day as general

chairman of the 38th Governor’s Cup Challenge, an annual junior-match

race championship hosted by Balboa Yacht Club that enters its final

two days beginning today.

Scandone appreciated the competitive sailing of two boats battling

one another in the water in an event he raced in 20 years ago. Maybe

it’s because he is in a battle of his own, against a disease with no

cure.

Scandone was diagnosed with ALS, Amyotrophic Lateral Sclerosis,

two years ago. He originally went to a chiropractor because of back

pain.

“Disbelief more than anything,” said Scandone when asked about his

initial reaction to learning he had the disease, which attacks both

upper and lower motor neurons and causes degeneration in the brain

and spinal cord.

“I thought something had to be wrong.”

A chiropractor referred Scandone to a neurologist who performed

several tests that later revealed the disease’s presence. Scandone

went for a second opinion.

He got the same answer.

“More disbelief,” Scandone said.

Scandone has lost about 10 pounds in the two years since and walks

with the help of a cane and orthotic braces wrapped around his

ankles.

Instead of basketball and surfing, he has taken up fishing and

continues to golf.

And, he still sails.

Scandone will head to Chicago in August to compete in the

Independence Cup, U.S. Sailing’s national championship for disabled

sailors and then fly to Maine to help Tom Brown prepare to race for

the U.S. team in the Paralympics in Athens, Greece, host city of the

Olympics.

“I still feel good,” said Scandone, who is married and lives in

Fountain Valley. “The average is two years to live [if one has the

disease], so I didn’t figure to be doing well by this time.

“I’ve started doing a lot of different stuff to make sure I get

the kid out of me. You’ve got to look at it from the positive

standpoint: I don’t have to go to work.”

Scandone quit his job as a sales director for a company that makes

wood-fired ovens six months ago and has spent much of this time since

at the Balboa Yacht Club.

“I wanted to help out at the club in some capacity and [Len Bose,

the yacht club’s fleet manager] gave me the biggest job [as

Governor’s Cup Challenge general chairman],” Scandone said.

Bose chose Scandone for his “knowledge and passion” for sailing.

“I was happy I got a good organizer who really knows sailing,”

said Bose, who coached Scandone at Orange Coast College.

After Coast, Scandone transferred to UC Irvine, where he helped

lead the Anteater sailing team to a national title in 1988 while

earning All-American honors.

Jon Pinckney, a Newport Harbor Yacht Club member, was a teammate

of Scandone’s at UCI, which amassed a prolific winning streak for

several years in the late 1980s.

Pinckney and Scandone, friends since grade school, were regularly

UCI’s top two sailors.

“We trained and sailed all our lives together,” Pinckney said.

Scandone graduated from UCI with a social science degree in 1990

and, in 1992, competed in the Olympic trials, but failed to qualify.

He will attempt to make the Paralympic team in 2008.

“It depends on how my health is,” he said.

The average life expectancy of someone diagnosed with ALS, also

known as Lou Gehrig’s disease, is two to five years with 50% of those

diagnosed living more than three years, according to information on

the ALS Association’s website. Only 10% of those diagnosed live past

10 years.

Five-thousand new cases are diagnosed each year and as many as

30,000 Americans have the disease at a given time. Early symptoms can

include difficulty walking and painless weakness in the feet, arms

and legs.

Support for Scandone has swelled at the yacht club.

Rowell Greene, 63, remembered meeting Scandone when he was 6.

Scandone went on to coach Greene’s children in Balboa Yacht Club’s

junior program.

“He’s taught sailing to hundreds of kids and is an inspirational

leader,” said Greene, whose family has known the Scandones for 30

years. “He’s the kind of person I would want to hang out with.”

Those that know Scandone, like Greene, have rallied to his side in

the last two years.

“Everyone is torn because he has ALS,” Greene said. “At first you

don’t know what to do. It’s given us a commitment to support

[research for a cure] for ALS.”

Scandone, though, wouldn’t lead you to believe he has a terminal

illness, Greene said.

“I’ve never seen him feel sorry for himself,” Greene said. “He’s

made the determination to live life with the best quality and best

humor as possible. I’ve never heard him complain about [ALS] to any

depth.”

Scandone prefers treating every day with passion.

“I don’t look back to what I could have done differently to stop

this from happening,” Scandone said. “You’ve got to look at the

positive.”

For the next two days, his eyes will no doubt gaze toward the

white sails glimmering in the afternoon sunshine.