The world has started a lively debate about Amyotrophic lateral sclerosis (ALS), the Ice Bucket Challenge, and whether the challenge is helping to spread awareness about the cause or not. And even though this disease has been rampant for decades, not many people know what the disease actually is, what causes it, how can you identify it, or what can you do to prevent it. However, it was only since it started going viral on social media, through #IceBucketChallenge, that people started to take notice, and become more and more interested in this fatal disease.
- What is ALS? -
Amyotrophic lateral sclerosis (ALS) is more popularly known as 'Lou Gehrig's Disease', is a progressive neurodegenerative disease. It is called a progressive degenerative disease because it eventually attacks nerve cells in the brain and the spinal cord, and then the rest of the body. The progressive deterioration of the motor neurons in ALS eventually leads to death. The process leading up to death, is a slow and painful one, in which a person loses the ability of muscle movement and control. Many patients become completely paralised in the latter stages of the disease.
Early symptoms of ALS often include increasing muscle weakness in the limbs, slurring speech, and difficulty with swallowing or breathing. The reason for these symptoms is, as the motor neurons start deteriorating, the muscles no longer receive the messages that they require to function. Hence the muscles begin to atrophy (reduce in size) and the limbs, which are usually affected first, look thinner.
Although ALS has been prominent for decades, the nature of the disease is still not completely understood, however significant strides have been made in recent years with the development of medical science and technology. Still today, there is no cure or curative treatment available, there is only one FDA approved drug, Riluzole, that somewhat slows the progression of ALS. There are however, several other drugs used in clinical trials that might, somewhere down the line, hold promise.
Even though there are no curative measures thus far, there are various practices and medical devices that have been found to be helpful in managing the symptoms of ALS, and that improve the life of one afflicted by the disease for however long they have left. The average life expectancy for someone who has been diagnosed with ALS is from two to five years from onset of symptoms.
- What is the Ice Bucket Challenge? -
Essentially, the Ice Bucket Challenge is a viral campaign that aims to spread awareness about ALS as well as gather donations in order to fund the research behind the disease. Here's what the challenge dictates, that a participant must pour a bucket of ice cold water over themselves, or donate money to the ALS foundation, or do both. After which within 24 hours, they then nominate other people to do the same.
The campaign went viral on social media, drawing in a number of celebrities as well as people from all around the globe. The beginning of the social media frenzy is still debatable at this point, although some reports suggest that US baseball player and ALS patient, Pete Frates, started the idea of challenging people in a video on different social media platforms.
So far Ben Affleck, Abhishek Bachchan, Tom Hiddleston, Bill Gates, Jennifer Love Hewitt, Jim Parsons, Katy Perry, Katee Sackhoff, Justin Timberlake, Bipasha Basu, Ashton Kutcher, Steven Spielberg, Lionel Messi, Mark Zuckerberg, Justin Bieber, Bon Jovi, Dwayne 'The Rock' Johnson, Lebron James, Chris Pratt, Calvin Harris, Michael Jordan, Cristiano Ronaldo, Nicole Scherzinger, Adam Levine, Tom Cruise and hundreds of other celebrities and influcial world figures have participated in the Ice Bucket Challenge.
Mashable does a pretty good round up about ALS and the Ice Bucket Challenge.
- Why the challenge is a worth cause -
The Ice Bucket Challenge so far raised $8.6 million in 24 hours, topping the amount of donations that the ALS foundation has received thus far. As of August 20, The ALS Association has already received $31.5 million in donations as compared to $1.9 million that they received last year. The ALS foundation's official site reports that 'these donations have come from existing donors and 637,527 new donors to The Association.'
"This amount of money … it opens up new opportunities that were previously unfathomable," ALS spokesperson Carrie Munk told Forbes.
Many people disagree with the way the challenge is done, citing wastage of water, and spamming of timelines. But they fail to see the immense traction behind the campaign. Celebrities and world figures alike, along with millions of people are doing the deed, while also seeking information about the disease, those affected by it, and most importantly how they can help. The campaign may be ridiculous to some, and might not making much sense to others, but the point of it all seems to be getting across. As seen by the donations and the vast jump in the amount from last year, whatever you say about the Ice Bucket Challenge, you can't say that it hasn't made an impact.
And if you don't believe in all of that, listen to it from the horse's mouth. Here is Anthony Carbajal. He was diagnosed with ALS at the age of 25. Listen to him explain what the disease actually is, and why the challenge is a great thing.
- Here are some of the celebrities that helped spread the word about the campaign by taking the challenge -