Steven Vidinha keeps a money jar in his room. When people come to see him, he shakes them down for cash. If they make an excuse, like saying they don’t have their wallet, Vidinha makes a mental note and goes after twice as much the next time he sees them. The sign on the jar is very blunt: “What’s in your pocket?”

Vidinha, 79, knows he’s running out of time. He went into hospice care thinking he had six months to live. That was nine months ago. With the gift of each day and what breath he can summon he’s trying to do everything he can.

The jar is full of coins he’s won playing the local variation of poker known as “paiute.” There are dollar bills and some twenties, too. None of it is for him.

It took three years for doctors to figure out what was happening to the sturdy, gregarious fisherman and golfer. He just got weaker and weaker. By the time he was diagnosed with amyotrophic lateral sclerosis, or ALS, he was in the advanced stages of the disease and needed round-the-clock nursing care.

That’s not uncommon. “There are four stages of ALS, and most are getting diagnosed at stage 4,” said Kahala Howser, director of community outreach for the ALS Association. It’s worse for people on the neighbor islands, who often have to fly to Oahu for tests and more tests. Once diagnosed, many ALS patients from Hawaii seek treatment at UCLA or elsewhere on the mainland.

When the ALS Association was established in Hawaii four years ago, there were 15 people with the diagnosis on their contact list. Now, they have 55. Extrapolating from incidence rates, there are probably 80 to 100 cases in Hawaii right now. That means many are not diagnosed. The later the diagnosis, the less chance of extending life and preserving quality of life. The average lifespan of a person with ALS is two to five years, though some people, like revered football coach Charlie Wedemeyer, live much longer. ALS is also called Lou Gehrig’s disease after the baseball player who was cut down in his prime when his motor nerves began dying.

It happens that Vidinha and I are distant relatives, though this was the first time we had met. My Tutu’s father was his grandfather’s brother. It also happens that he is the third of my relatives to be diagnosed with ALS. It can run in families, but only 10 percent of all cases are familial. Most, like Vidinha’s and those of my paternal grandfather and maternal aunt, are not. That means the cause is unknown. That means the cure is a mystery, too.

For three years, Vidinha went through what he describes as “every test imaginable.” Much of what goes into diagnosing ALS is still the process of ruling out everything else. He was losing weight, getting so weak he couldn’t even squeeze a clothespin. Finally finding out why it was happening, though, was a huge blow. “ALS is a death sentence,” Vidinha said. “The emotional shock was the hardest. I finally had to tell myself, ‘You can’t continue like this. You have to get a hold of yourself,’ So I decided to keep myself busy.”

He and his wife, Dorothy, sold their house so she could move into an independent living apartment at Pohai Nani next door to the care center where he is. He is in a wheelchair and breathes with the help of a bi-pap machine, though his mind is as sharp as ever.

Vidinha, who grew up on Kauai and was one of the first graduates of Chaminade, did graduate work at UC Berkeley, served in the Honolulu Police Department and was director of the state’s Criminal Justice Data Center. He’s a precise, determined man. Perhaps his illness has made him even more so. He writes letters, solicits media coverage and government proclamations and hits people up for donations.

Vidinha’s money jar is for the local ALS Association. Right now, Hawaii is part of the “Gold West” chapter of the ALS association, which includes California. The goal is to eventually become its own chapter.

Next month, the ALS Association is holding a fundraising walk. Proceeds will go toward education and awareness, as well as things like equipment closets where families can borrow breathing or mobility apparatuses. Four years ago, the first year of the Hawaii walk, supporters raised $82,000. This year, the goal is $100,000.

Vidinha is doing everything he can think of to support the cause. He has his daughters make Portuguese-style pickled onions to sell as part of his fundraising efforts.

“Good, you know,” he says. “You want? I’ll sell you some.”

Vidinha is relentless, a one-man PR/marketing machine, but he is not alone in his quest.

Just this year, a multidisciplinary clinic team was established so that an ALS patient can see all of their specialists on one day rather than have multiple doctor appointments on different days all over town. Led by neurologist Dr. Brandon Hirota, experts from nine disciplines gather at Kuakini Physicians Tower for the clinic. They see each patient and then confer on cases.

Terryn Davis is a care manager for the ALS Association. She travels all over the state, going into homes, schools and hospitals to give training on the sorts of things ALS patients need. She helps families anticipate things before they happen, “so that they don’t have to try to make these decisions in the emergency room,” she said.

Howser says ALS can be an extremely isolating disease. It often strikes people in their active years, and friends don’t know what to say, how to act, how to help. But Vidinha’s friends come to visit him at the care center all the time. They bring money for his jar and he jokes that they sneak in beer, though perhaps he’s not joking.

Of course, he wants a cure, but he also wants to help others who may be as he was, undiagnosed and untreated. Awareness is key. Starting the conversation is important.

“Anybody with questions can call us,” Davis said. “Or call Steve,” Howser said, smiling. “He’ll sign them up for the walk to be on his team.” She laughs, but perhaps she’s not joking, either. Vidinha points to the design for his Team Vidinha T-shirt. “You want? Tell me what size.”