What is ALS?
In recent weeks, it seems that everyone is getting in the act—that is the “ice bucket challenge”—from Lady Gaga, Jennifer Lopez, Bill Gates and even late-night talk show host Jimmy Fallon.
The “ice bucket challenge” involves dumping a freezing cold bucket of icy water over your head to raise awareness and donations for Amyotrophic Lateral Sclerosis (ALS or Lou Gehrig’s disease). So far, the chilly activity and virtual sensation is sweeping across America with over 15 million people commenting, posting or liking the Ice Bucket Challenge on Facebook and over 2.2. million tweets.
According to the ALS Association as of August 26th, the “ice bucket challenge” raised over $88.5 million in donations compared to $1.8 million during the same time period last year (July 29 to August 18). Donations have poured in from existing donors and 307,598 new donors according the Association.
The National Institute of Neurological Disorders and Stroke says that ALS is classified as a rare disease but is the most common motor neuron disease that we know of. All races and ethnic backgrounds are affected and two out of 100,000 people develop.
Some are wondering why prior to the challenge this rare disease was rarely talked about, however, a neurologist believes he understands why.
“Diseases that are rare and offer no definitive cure become sidelined because they are difficult to talk about,” says Dr. Franco Campanella, department vice chair of Neurology at Advocate Christ Medical Center’s Neurosciences Institute in Oak Lawn, Ill. “The diagnosis can often cause hopelessness in patients and families. Fear gives way to isolation and public awareness suffers.”
However, some say the activity is clever, but many may not exactly know how this summer social media phenomena came to exist and what exactly ALS is.
For the waves of people who have accepted the challenge, it is the story of Pete Frates, a former star baseball player at Boston College who was diagnosed with ALS. Frates shared his battle while facing the deadly disease during an ESPN SportsCenter interview earlier this month to raise awareness about the progressive and debilitating neurodegenerative disease that affects nerve cells in the brain and the spinal cord.
The “ice bucket challenge” hits close to home for one Chicago neurologist whose mother succumbed to the disease in 1987.
“It’s a devastating paralyzing disease that destroys the motor system of the brain, spinal cord and peripheral nerves, and as a result eventually victims of the disease cannot speak, swallow or breath,” says Dr. Mel Wichter, chair of neurology, Advocate Christ Medical Center in Oak Lawn, Ill. “In addition to being unable to move their arms and legs. Unfortunate amidst that devastation, sensation and awareness are unaffected.”
On June 2, 1941, National Baseball Hall of Famer Lou Gehrig suffering from ALS died at the age of 37. Today, Gehrig remains an inspiration, representing fortitude, humility and courage to the tens of thousands of Americans living with ALS.
Check out this video clip and watch how some Chicago neurologists were influenced by the challenge and took on the icy cold plunge.
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