ALS or "Lou Gehrig's Disease" is among the very cruelest of all diseases known to man. It got some attention this past week when golfer Tom Watson's caddy died of the disease as Watson began his play at the Master's tournament. There's also a professional golfer from Norwich, Vermont who is stricken with this nightmare as well. Some of the other famous victims were Lou Gehrig, of course, and another Yankee legend, pitcher Catfish Hunter. The great English physicist Stephen Hawking, who some say is one of the smartest men in the world, has also been devastated. As you can see, niether athletic prowess, brains, or money make a person immune to the ravages of ALS.

I began looking into this disease when I read an article about a close, extended family in the Boston area. One of the members of this family had gone through a battery of tests and was told that he either had a brain tumor or ALS. He was given an appointment with a neurologist for a brain scan to see if a brain tumor could be ruled out. Prior to the appointment, the family researched ALS and brain tumors. They then started praying that their loved one had a brain tumor.

90% of ALS cases are NOT hereditary. It is not a lifestyle disease. It has nothing to do with smoking, drinking, drugs, poor eating habits or lack of exercise. (Look at Lou Gehrig, the "iron man" athlete of the New York Yankess who, until Cal Ripkin recently broke it, held the record for most consecutive games played.) It can strike any one at any time. Doctors don't know what causes it. There is no vaccine, there is no cure, and there is no meaningfully effective treatment. It completely paralyzes the victim from head to toe and then causes the person to die by suffocation, usually within four years. It is 100% fatal. The victims who die sooner, (like Tom Watson's caddy, who died 15 months after diagnosis) are, to some extent, the luckier ones. At least their debilitation and devastation was over more quickly.

Here's the worst part. The part you don't hear much about because the pharmaceutical conglomerates don't want you to. Here's the dirty little secret. The pharmacuetical companies are, for the most part, NOT working on treatments for ALS. They are NOT doing clinical trials for drug treatments, and they are NOT making a legitimate effort to cure or vaccinate ALS. Why? Because ALS "only" affects 5000 new victims in the U. S. each year. The accountants and actuaries at the pharmaceutical conglomerates have mathematically calculated that that ALS is an R&D "loser" in terms of the bottom line. They are trying to maximize profits by extracting the most benefit from their research and development funds. Why spend $25 million on a clinical trial for an ALS drug to sell to 5000 new people a year when that same $25 million could be used on a cancer or AIDS drug that could be sold to hundreds of thousands of new people a year? I know, perhaps it could be justified in a moral argument of some kind as well, "Well isn't it true that it would be better spent helping more people as opposed to less?" I suppose you could, and the conglomerates do, make that argument. I guess it just amazes me how their moral arguments happen to coincide with their bottom line ALL OF THE TIME. Must be a coincidence.

In case you suspect there is some personal agenda here, your wrong. Neither myself nor any of my family or friends, thank God, have ALS. I realize that people take up various causes for various reasons, and that's fine. This is mine.

I am making this entry in hopes that those of you who donate 10% of your annual tax refund to charity will consider the ALS Therapy Development Fund at 215 First Street, Cambridge, MA, 02142. This is an non profit charitable organization that is funding and doing (in house) clinical trials to develop treatments to arrest and reverse the devastating effects of ALS. Because of the posture adopted by the for profit pharmaceutical conglomerates, non-profit research is the hope of ALS victims today. It is their only hope.