NORTH SALEM, N.Y. Every year, North Salems Bill Monti and his wife, Fran, lead a 2-mile Walk to Defeat ALS in the company of family and friends of ALS victims and supporters of the cause.
ALS, often called Lou Gehrigs Disease, stands for amyotrophic lateral sclerosis, a disease of the nerve cells that control voluntary muscle movement. Usually genetic, it is currently incurable and fatal. While it generally targets white males over the age of 50, the Montis son, William, was only 28 when he was diagnosed. He lived to the age of 33.
About 35,000 Americans are alive with ALS at any given time. The disease claims about 5,000 a year, said Bill Monti. It is defined as an orphan disease because the number of victims is relatively small. For that reason, government funding is minimal, Monti continued. Most funding comes from individual donations.
ALS doesnt get a lot of attention from the large pharmaceutical companies because they dont see it as a home run, Monti said. They cant make billions of dollars from it. There is now a drug called riluzole that slows the progress of the disease but thats about it.
The illness came to the publics attention when New York Yankee great, Lou Gehrig, succumbed to ALS in 1941 at the age of 37. His story was dramatized in the 1942 film Pride of the Yankees with Gary Cooper as Gehrig.
Other victims of the disease have included actor David Niven, the musicians Lead Belly and Charlie Mingus, boxer Ezzard Charles, Sen. Jacob Javits and Chinese leader Mao Zedong. The scientist Stephen Hawking continues to survive as an ALS victim. Hawking is an outlier, Monti said. Hes had his trachea removed. He uses a feeding tube and hes on full life supports.
Former Yankee Catfish Hunter also suffered from ALS. Still, we cant get the Yankees to stand behind the fight, said Monti. We dont want money. We just want them to say they support research. When I approached Lou Gehrigs estate attorney about getting the Yankees behind us, he said, Dont even ask. Weve been rejected.
The first documented cases of ALS date from the 1850s. Recent research by the Veterans Administration has discovered that twice as many veterans succumb to the disease as ordinary civilians. No one knows why, Monti said.
Funds raised by the upcoming ALS Walk will be devoted to research, with some set aside for The Borrowers Closet. The closet lends wheelchairs, breathing devices and other apparatus to victims in need.
The Westchester Walk to Defeat ALS starts at 10 a.m. on Sunday, June 10, in Tibbetts Brook Park, Yonkers. For further information, call (914) 277-8964 or email firstname.lastname@example.org .
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