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Westchester Walks to Defeat Lou Gehrig’s Disease

NORTH SALEM, N.Y. – Every year, North Salem’s 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 Gehrig’s 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 doesn’t get a lot of attention from the large pharmaceutical companies because they don’t see it as a home run,” Monti said. “They can’t make billions of dollars from it. There is now a drug called riluzole that slows the progress of the disease but that’s about it.”

The illness came to the public’s 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. “He’s had his trachea removed. He uses a feeding tube and he’s on full life supports.”

Former Yankee Catfish Hunter also suffered from ALS. “Still, we can’t get the Yankees to stand behind the fight,” said Monti. “We don’t want money. We just want them to say they support research. When I approached Lou Gehrig’s estate attorney about getting the Yankees behind us, he said, ‘Don’t even ask. We’ve 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 roxrfun@wildblue.net .

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