His name is Kevin and he's new at New England Sinai Hospital, up on the second floor, not to live, just to be treated. His name and the name of his disease are all I know about him.

Amyotrophic lateral sclerosis, Lou Gehrig's disease, is rare, we're told. The likelihood of coming down with it is right up there with being mauled by a lion. So, how come if it's so rare, everyone knows someone who's sticken with it? Brian Dickinson, a columnist for the Providence Journal, died of it last month. He had it for nine years. People usually die in three or four. He lived hooked up to a respirator and a feeding tube, unable to move a muscle, wipe a tear, swallow, cough, speak.

Mike Cummings, who a few years ago quite literally scooped me up as I was about to fall, was diagnosed with ALS soon after. He can't do anything for himself now, this strapping guy who spent his life doing things for others.

Adele Lawrence, who lived in my town, died of ALS last year. It began with weakness in her legs. The diagnosis was long in coming. One charlatan convinced her she had mercury poisoning and would get better if she followed him to some island for a miracle cure. Thousands of dollars later, the disease was still wreaking havoc.

Some with ALS choose to have a feeding tube and be put on a respirator. Adele didn't. Interventions don't stop the disease. ALS goes right on destroying muscle, slackening the neck, the jaw, the mouth, even the eyes so that in the end, a person cannot even nod or blink.

People live on anyway. Toni Diamond was a flight attendant and barely 40 when she was diagnosed three years ago. She lives today, a vibrant soul in a body that can do nothing.

A few weeks ago, at baseball games all over the country, actors recited the words that Lou Gehrig spoke when he stood at Yankee Stadium and announced he was quitting baseball. Next Wednesday, the first ALS Advocacy Day will be marked at the State House. All this for a disease hardly anyone gets? The truth is people are getting it. The San Francisco 49ers had three teammates with it. Six people in a Florida community of only 1,400 have it. Twenty-four people in Middleborough, a town of 18,000, have it. More than 40 current and former employees of an Air Force base in San Antonio have it.

We find money we don't have for all kinds of crises in this country. When hurricanes decimate towns, and floods and fires wipe out communities and terrorists destroy people, landmarks and our trust, Americans respond.

But when it's a disease that decimates?

Last weekend, a Georgia woman went into a nursing home where two of her sons had been living since January and shot and killed them both. They had Huntington's disease, which slowly cripples not only the body but the brain as well. They weren't getting cared for at the nursing home and this woman, whose husband had died of the disease, could no longer care for them herself. She'd reached a dead end, plain and simple.

Diseases like Huntington's, which is genetic, and like ALS, which is allegedly rare, are not on people's minds because the people who have them aren't walking around telling their stories, and their families are too busy caring for them, to make sure that their stories are told.

But just imagine. What if Sept. 11 had been treated the way rare diseases are, as a disaster that affected just a few? What if the government had said that because 10 times as many people die in car crashes, the bulk of our resources belongs in highway safety initiatives, not in homeland security? Would we put up with the government saying, "The numbers are on our side. Never mind about the terrorists."

Of course not. This thinking would get us killed.

Exactly. It does. Every day. All over America.