May 13, 2005

ON FAMOUS PEOPLE WITH ALS

Black holes… the 1963 movie hit “The Pink Panther”... boxing’s World Heavyweight Champion of 1950… “Sesame Street”…
If you’re wondering what these things have in common, the answer is they are all associated with the talents or achievements of notable people affected by amyotrophic lateral sclerosis, ALS.

ALS is one of the most devastating diseases among the more than 40 neuromuscular disorders MDA is dedicated to defeating. ALS targets adults, causing widespread destruction of motor neurons and resulting in loss of voluntary muscle while leaving the mind intact. It often leads to paralysis and death in only a few years.

Dr. Stanley Appel, the leading neurologist who serves as director of the Vicki Appeal MDA ALS Center at Methodist Hospital in Houston, refers to ALS as “the nice guy’s disease” because of the warmth and humanity that, for whatever reason, is so often apparent in the courageous men and women who are affected.

Chris Rice of Houston, who has ALS and is seen by Dr. Appel, answers easily to that description. He and his wife, Reda, are both high achievers and two of the nicest people I’ve had the pleasure of knowing. They’re doing an outstanding job serving as national co-chairpersons of MDA’s ALS Division.

ALS is also referred to as “Lou Gehrig’s disease.” That’s in reference to another nice guy who had the disease, and who happened to be the first famous person to bring ALS to public attention.

Gehrig was the New York Yankees’ first baseman and a powerhouse hitter. He and his teammate, Babe Ruth, made an unbeatable slugging combination through much of the 1920s and 30s. Gehrig set a record, unsurpassed for over half a century, by playing 2,130 consecutive games. That streak, along with Gehrig’s awesome athletic prowess, came to an end in the late 1930s when Gehrig learned he had a disease by the daunting name of amyotrophic lateral sclerosis. In 1941, two years after stepping down from the game he loved so much, Lou Gehrig died of ALS.

To learn about the connection between MDA and the Gehrig name, click here.

	1950s World Heavyweight Champion Ezzard Charles, seen here delivering a knockout punch to opponent Bob Satterfield, lost his life to ALS in 1975.

During the 1940s, another great sports figure, Ezzard Charles of Cincinnati, Ohio, rose from obscurity to world boxing prominence. Defeating light heavyweight champion Archie Moore no less than three times, once by knockout, Charles earned a shot at the World Heavyweight Championship in 1950, facing off against “Jersey” Joe Walcott. Ezzard Charles was victorious, seizing the world title. He defended the title three times but eventually lost it to Walcott. In his later years, Charles received a diagnosis of ALS. He died in 1975, some 15 years before being inducted into the International Boxing Hall of Fame.

British actor David Niven first came to attention in Hollywood in the 1930s, appearing in a variety of classic films for Samuel Goldwyn Studios such as “The Prisoner of Zenda” and “Wuthering Heights.” He returned to his native England at the start of World War II to serve in the army. After the war, he resumed his film career in Hollywood, appearing in such films as “Around the World in Eighty Days,” “My Man Godfrey” and “Separate Tables,” for which Niven received an Academy Award. In the 1960s and on, he was the epitome of the debonair English gentleman with a touch of light humor, adding his elegant presence to such films as “The Guns of Navarone,” “The Pink Panther” and “Death on the Nile.”

It was while Niven was appearing on a British talk show that a viewer recognized the symptoms of ALS (known in the United Kingdom as motor neuron disease) and contacted Niven to inform him. Niven continued to appear in films for several years after obtaining his official ALS, diagnosis, but died in 1983.

Jacob Javits, born in 1904, became a major and much admired figure in New York politics. Like Niven, he served in the military during World War II, and then served as United States congressman, New York state attorney general, and finally as United States senator representing that state for 24 years. He served on the Senate Foreign Relations Committee and was the principal author of the Pension Reform Act of 1974.

Javits learned he had ALS in 1975. After finishing his last Senate term in 1981 and receiving the Presidential Medal of Freedom in 1983, Javits died of complications of his ALS in 1986.

Children the world over owe a debt of thanks to Jon Stone, an award-winning writer and producer who was co-creator of “Sesame Street.” The phenomenally successful children’s program has been a landmark in educational television since its debut in 1969 and is still on the air. Stone helped create such beloved characters as Big Bird and the Cookie Monster. But his career was cut short due to ALS and he died in 1997.

A world-renowned British physicist, Stephen Hawking earned his Ph.D. in cosmology (study of the structure and dynamics of the universe) at Cambridge University. He is one of the pre-eminent figures in modern physics, making groundbreaking contributions on such subjects as quantum theory, black holes and the big-bang model of the universe’s origin. Hawking is alive and working today. His ALS is atypical, having been diagnosed when Hawking was 21 and progressing slowly in the following four decades.

“I was lucky to have chosen to work in theoretical physics, because that was one of the few areas in which my disability would not be a serious handicap,” Hawking has said. “And I was fortunate that my scientific reputation increased, at the same time that my disability got worse. This meant that people were prepared to offer me a sequence of positions in which I only had to do research, without having to lecture.”

Hawking eventually began to use a motorized wheelchair for mobility and underwent a tracheotomy, after which he lost his vocal powers and required around-the-clock nursing care. He writes using his computer and communicates via speech synthesis technology, which he says gives him an American accent.

	British physicist Stephen Hawking, affected by amyotrophic lateral sclerosis since the 1960s, has stirred public interest in black holes and the origins of the universe.

Through his best-selling books such as “A Brief History of Time” and his appearances in pop culture phenomena ranging from a Pink Floyd song to an episode of “The Simpsons,” Hawking continues to be a widely recognized figure as well as one who has made lasting contributions to our understanding of how our universe works.

Pulitzer Prize winning photographer Eddie Adams, singer Dennis Day and Hall of Fame pitcher Jim “Catfish” Hunter are more examples of the many high-achieving individuals who fought battles against ALS. MDA is determined to find medical answers that will benefit all people, famous or not, who are battling ALS.

ALS is a relentless disease, but we’ll continue to counter it with relentless determination in MDA’s all-out assault against the disorder. That effort includes the funding of research seeking new and better treatments and ultimately a cure for ALS. It also means providing comprehensive health care services, including diagnostic and follow-up care at MDA clinics, ALS support groups, and assistance with purchase of equipment such as wheelchairs, braces and communication devices.

With every best wish . . .

The Ross Report Archive