The ALS ice bucket challenge has taken over Facebook newsfeeds, but is it doing anything productive?
The challenge asks participants to either dump a bucket of icy water on their heads or donate $100 to an ALS foundation within 24 hours of being nominated and then nominate a few people to do the same.
According to Elle, it’s “actually a big deal” because the challenge is raising awareness and increasing donations to ALS research.
“As of Friday, August 15, 2014, The ALS Association has received $9.5 million in donations compared to $1.6 million during the same time period last year (July 29 to August 15). These donations have come from existing donors and 184,812 new donors to The Association,” the ALS Association reported in a release Friday.
Donations are good, but what about the people who stand under a bucket and don’t make a donation? The idea is that they, and those who see the videos in their newsfeeds, will look ALS up and learn more about it. They will see that, yes, the cause does need donations and hope their video and nominations encourages others to give money.
The online magazine Slate alleges that the ice bucket challenge didn’t really start with Pete Frates, who has ALS, but rather as a silly ploy for social media attention. The Slate story also points out that people may be buying bagged ice to complete the challenge, which should make one wonder why that $3 is not being given directly to ALS research.
I have to agree with Slate editor Will Oremus that “it’s hard to shake the feeling that, for most of the people posting ice bucket videos of themselves on Facebook, Vine, and Instagram, the charity part remains a postscript.”
One person claims that the ice bucket challenge is a symptom of a societal problem in which people “opt out” of sacrifice instead of facing up to the challenge of helping those in need.
“It hurts me to see a generation opting out of charitable donation,” James Weir said on an IndieGoGo page he created to raise money for ALS without any ice dumping.
Nevertheless, the challenge has increased donations dramatically. Presumably, the challenge has also raised awareness by increasing traffic to relevant websites. If the end result is good, does that make the means to get there irrelevant or unimportant? As long as the ALS fund is growing, does it matter whether people are using the challenge as a way to get likes on their Facebook videos?
Some might say that the videos are raising awareness, but are people really learning more about ALS? Is reading the first few paragraphs on Wikipedia or ALS Association Website good enough?
I decided to put together a list of ten facts about the disease to raise awareness in a way that I know how — through a article — to help us all learn a little more about ALS.
- ALS stands for amyotrophic lateral sclerosis, the disease commonly called Lou Gehrig’s disease in memory of baseball player Lou Gehrig, who was diagnosed in 1939.
- ALS is a progressive disease that causes neurons to degenerate, which prevents muscle control and eventually causes paralysis and death. Even though it generally limits only voluntary muscles, ALS can cause breathing problems as well.
- The cause of ALS is unknown. The disease is very rarely passed genetically.
- In the United States, about 15 new cases of ALS are reported every day.
- The life expectancy for individuals diagnosed with ALS is short: about 50 percent live three years or more; 20 percent live five years or more; and up to 10 percent live more than ten years. The average is two to five years.
- There are three types of ALS:
- sporadic: the most common in the US; accounts for 90 to 95 percent of all cases
- familial: rare; occurs when ALS is in a family’s genes; believed to account for five to 10 percent of cases
- Guamanian: describes cases found in Guam and the Trust territories in the Pacific in the 1950s; there was an unusually high number of cases there at that time
- While muscle weakness and paralysis are defining characteristics of ALS, early symptoms vary and can include dropping things, tripping, unusual arm and leg fatigue, slurred speech, muscle cramps and uncontrollable laughing or crying. Hands and feet are often the first problem areas.
- Riluzole is the only drug that has been shown to prolong the lives of ALS patients by slowing the disease’s progress, and it was approved by the FDA in 1995. Other drugs are being tested through clinical trials.
- There is no way to definitively test for ALS, so diagnosis depends on ruling out other causes of a patient’s symptoms. According to the National Institute of Neurological Disorders and Stroke, “To be diagnosed with ALS, people must have signs and symptoms of both upper and lower motor neuron damage that cannot be attributed to other causes.”
- According to its website, “The ALS Association is the only national not-for-profit health organization dedicated solely to the fight against ALS,” and the organization has given more than $67 million to research for ALS cures and treatments.
All information has come from the ALS Association except where otherwise noted with links.