But living and dying with
Lou Gehrig’s disease is serious
Nearly everyone has seen the videos on social media — possibly hundreds of them by now. Someone accepts the ice bucket challenge, gets a bucket of ice water dumped on their head and challenges a few more people.
Those people accept the challenge, or donate to the ALS Foundation, or both, and it grows. The ice bucket challenge is so ubiquitous that some are beginning to tire of seeing so many. As with anything that gets overexposed, the critics are coming out.
“Let’s be clear: The cycle is tiresome. It’s stupid. It’s primarily intended, by all accounts, to let the challenger (a) exhibit his altruism publicly and (b) show off how good he or she looks soaking wet,” wrote Caitlin Dewey in The Intersect blog of the Washington Post.
Sure, not everyone who does the challenge even knows what the initials ALS stand for. “I’m going to donate 501 cents to SLA . . . LAS . . . ALS” one six-year old said in a recent challenge posted on Facebook.
But you cannot argue with the results. In one month, the challenge raised $100 million for the ALS Foundation, compared to just $2.5 million in donations during the entire year of 2013.
No matter how silly and overexposed the challenge is, the fact is amyotrophic lateral sclerosis is a serious disease that most people know little, if anything, about.
It was brought into the national awareness in 1939 by New York Yankees’ great Lou Gehrig, an exceptional baseball player who realized he was losing his abilities and sought treatment. Yet since then, medical progress has been limited.
In ALS, a patient’s mind stays strong, yet they gradually lose all motor and muscle function as the nerves that send signals to those muscles slowly deteriorate.
About 5,600 people are diagnosed with ALS each year, and it is estimated to affect two of every 100,000 people. It occurs throughout the world with no racial, ethnic or socioeconomic boundaries. It can strike anyone.
The one drug approved for ALS slightly alters its progression, allowing sufferers more time in higher functioning states. Yet there is no cure.
There can be significant costs for medical care, equipment and home health caregiving, particularly later in the disease.
Silly, overexposed, ridiculous or whatever, at least the ice bucket challenge is bringing serious attention and funding to ALS research and ALS sufferers.