The Fight Against ALS

Floor Speech

Mr. WHITEHOUSE. Mr. President, this Fourth of July marked the 75th anniversary of the muggy summer afternoon the great Henry Louis Gehrig bid farewell to baseball and introduced Americans to the illness that would become known as Lou Gehrig's disease.

Lou Gehrig was the only surviving child of a sheet metal worker and a maid--immigrants from Germany. Gehrig brought his family's humble work ethic and steadfastness to his own job, playing first base for the New York Yankees. His career was one that even a Red Sox fan can admire. On June 1, 1925, 4 days before his 20th birthday, he pinch-hit for Pee Wee Wanninger. On June 2, he broke into the starting lineup for good. He would play every single regular and postseason Yankees game until May 2, 1939--2,130 in a row.

``The Iron Horse,'' as Gehrig was known, didn't just play a lot of baseball, he played superb baseball. He racked up more than 2,700 hits, for a lifetime batting average of .340 and close to 2,000 runs batted in. He had 493 career home runs. His No. 4 jersey, known as ``the Hard Number'' by the American League pitchers who had to try to get the ball past him, was the first ever retired from Major League Baseball.

Despite his exceptional play, Gehrig was happy to leave the spotlight to teammate Babe Ruth, or later, Joe DiMaggio. ``I'm not a headline guy,'' he once said. ``As long as I was following Ruth to the plate, I could have stood on my head and no one would have known the difference.''

Lou Gehrig wasn't just great. He was always great. And his competitive spirit inspired Americans during the long years of the Great Depression. But for some unknown reason, his numbers fell off sharply in the 1938 season. He had trouble gripping the bat, running, even walking and sitting. So on the first Tuesday of May 1939, eight games into the season, the Yankee captain took his name off the lineup card. ``I'm benching myself, Joe,'' he told manager Joe McCarthy, ``for the good of the team.''

A series of tests at the Mayo Clinic in Rochester, MN, would reveal that amyotrophic lateral sclerosis, a disease that causes nerve cells to stop working and die, was robbing Gehrig's swing of its fabled power.

ALS attacks neurons responsible for controlling voluntary muscles and progresses rapidly. The brain and spinal cord lose the ability to send messages to the muscles of the body, which weaken and atrophy. ALS can impair speaking, swallowing, and breathing. As Gehrig biographer Jonathan Eig explains, the progression of ALS is like ``shutting down the body's functions one by one, like a night watchman switching off the factory-floor lights.''

Yet on that humid 1939 Independence Day, between the legs of a doubleheader against the Washington Senators, Lou Gehrig stood before a tangle of microphones at homeplate, bowed more by humility at the adulation of 62,000 Yankee fans, teammates, ball boys, and groundskeepers than by his disease. Clenching his cap in two hands, the man sportswriter Jim Murray once described as a ``Gibraltar in cleats'' spoke 278 simple words that still echo in the ears of those of us not even born at the time they were uttered.

``Fans,'' he began, ``for the past two weeks you have been reading about a bad break I got. Yet today I consider myself the luckiest man on the face of the earth.''

Although there is still much we have to learn about the causes of ALS, we have made great strides in research and treatment since Lou Gehrig took himself out of the game. With the help of Federal grants, advances in genetic research have opened the door to insights about the disease's hereditary nature, and drugs and assistive technology are improving dramatically.

Kreg Palko of Barrington, RI, recently underwent a pioneering surgery to transplant millions of stem cells into his spinal cord, in hopes of undoing the paralyzing effects of his ALS. Until Kreg discovered he had ALS just last year, he was always on the move--as a speedy defensive back at the Air Force Academy, Gulf War pilot--or active skier and surfer. ALS has dampened his mobility but not his competitive spirit. Kreg has volunteered for every clinical trial he can, and whether or not these treatments heal Kreg, he and his wife Elizabeth know this research will benefit future patients.

The heart of the movement for a cure is the dedicated community of advocates, researchers, physicians, and ALS patients. When members of the Rhode Island chapter of the ALS Association visited my office this May, they brought along baseball cards featuring Rhode Islanders living with ALS. I saw in each face courage and dignity equal to Lou Gehrig's.

Senator Jacob Javits of New York, who worked for years after his 1979 ALS diagnosis to improve long-term care and end-of-life policies, said:

Life does not stop with terminal illness. Only the patient stops if he doesn't have the will to go forward with life.

Brian Dickinson refused to let ALS stop him. Editor of the Providence Journal's editorial page and a prize-winning columnist, he had an indomitable spirit. This was the man who once sang ``The Battle Hymn of the Republic'' outside KGB headquarters on a tour of Soviet Moscow. And although ALS silenced his voice, Brian continued to tap out his column for a number of years, with the help of a special computer in his home. His profound, optimistic observations inspired his readers. ``I do believe,'' he once assured us, ``that the capacity for hope can help us meet stiff challenges.''

Brian finally lost his battle with ALS in 2002. Last month, the ALS Association Rhode Island Chapter presented the Brian Dickinson Courage Award to Kreg Palko.

As we look back to the day Lou Gehrig reminded us he had ``an awful lot to live for,'' we should renew our own will to go forward, with workmanlike determination, toward a cure.

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