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Ailene Voisin: MLB moves to promote ALS awareness

Published: Sunday, Jul. 5, 2009 - 12:00 am | Page 5C
Last Modified: Sunday, Jul. 5, 2009 - 10:58 am

SAN FRANCISCO – Lou Gehrig was handsome and athletic and admired, a New York Yankee by profession, and a real gentleman by all accounts. He smacked home runs. He never took days off. He was the subject of several books and two movies, one starring legendary actor Gary Cooper.

But 70 years after Gehrig uttered his emotional farewell at Yankee Stadium, the disease that claimed his life at age 37 – amyotrophic lateral sclerosis, an illness that attacks nerve cells in the brain and spinal cord, and is more commonly known as ALS – still takes lives.

There is no known cause. And no known cure.

Seventy years later.

No cure.

When Major League Baseball officials were approached last fall by a Utah attorney who suffers from ALS and asked why the league did so little to fight the disease named after one its greatest first basemen, Commissioner Bud Selig responded by designating July 4 as "4ALS Awareness" day.

Coordinating efforts with national and regional ALS Associations, ceremonies celebrated Gehrig's life Saturday at every major league ballpark. Representatives from ALS groups organized pregame tailgate parties. Informational booths were set up on concourses. ALS patients – some in wheelchairs – addressed crowds before pregame introductions. And throughout the afternoon, including the Giants-Astros matchup at AT&T Park, video clips of Gehrig aired on video screens in the outfield.

"We've been working with the ALS Association Greater Bay Area Chapter and other local organizations for several years," said Giants community relations director Shana Daum, "but nothing of this magnitude. MLB getting behind it helps a lot, because it's giving us a national voice. I don't think people know much about it."

The disease is less publicized than cancer, HIV or heart ailments largely because it affects a much smaller segment of the population.

According to the ALS Association, approximately 30,000 Americans suffer from the disease, at an incidence of two per 100,000. Life expectancy is two to five years, and only one drug (Riluzole) has been known to prolong lives – and only by months. Medical care, equipment and home health caregiving can be exorbitant; as the disease progresses, victims often become paralyzed and require feeding tubes, ventilators and devices to communicate.

"This has been a very difficult disease to understand," said Dr. Catherine Lomen-Hoerth, director of the ALS Center at UCSF, speaking at the tailgate party before Saturday's game. "But with the stem cell research, I think we're getting much closer. We should be starting our clinical trials soon, and we're hopeful that we won't just be able to slow down the disease, but actually reverse it."

While researchers, physicians and ALS patients from Northern California mingled with members of the public at AT&T Park, several in the group in fact were cautiously optimistic about the ongoing stem cell research, and heartened by the lifting of restrictions previously imposed by the Bush Administration. There is some concern, however, about continued state funding, which is another reason MLB's national involvement is thought to be occurring at a critical time.

Dr. Jim Nishio, a Sacramento pulmonary specialist who was diagnosed with ALS 2 1/2 years ago, but who maintains his practice and complains only mildly of diminishing dexterity in his hands, learned of the 4ALS event campaign from his wife. Denyse Nishio, also a physician, purchased tickets for the couple and their four grown children as a show of support, but also because of the baseball.

"We thought this would be a good thing to do," Jim Nishio said. "It's a devastating disease that most people aren't aware of. There really is nothing you can do. The stem cell research … we're hoping there's something there."

An impassioned Kings and Giants fan, Nishio added, with a grin, "I was a big Yankees fan growing up. I was into Mickey Mantle, those teams. But (laugh), of course I love Lou Gehrig."

Seventy years later, the "luckiest man on the face of the earth" remains relevant for more important reasons than his ability to play.

ALS is still with us. Still just as lethal.


Call The Bee's Ailene Voisin, (916) 321-1208.


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