ALS Ice Bucket Challenge Raises Millions, But One Man Explains Why So Many People Are Doing It

One Man Explains Importance Of ALS Ice Bucket Challenge
The ALS ice bucket challenge has raised awareness and funds and one man explains why it's important. Photo courtesy of Youtube Screenshot, zboy2855

The ALS ice bucket challenge has become a viral success, to say the least, and has raised millions at record highs, but many don’t know exactly what ALS even does to the body. Instead of dumping a bucket of ice water on his head, a man chose to explain his experience watching what his mother, who passed away from ALS, went through.

He, along with 1.2 million Facebook users’ videos, are raising awareness for the fatal neuromuscular disorder amyotrophic lateral sclerosis, better known as Lou Gehrig’s disease. Approximately 5,600 people are diagnosed with ALS every year, and within five years from the time of diagnosis, 90 percent of its victims will die. The short life expectancy isn’t the worst part of the disease, but instead how it manifests inside the body and slowly deteriorates the brain's ability to communicate to muscles. In order to raise awareness along with research funds, people who videotape themselves dumping ice water on their heads, post it to Facebook, Instagram, or other social media websites, and then challenge their friends or family members to do the same within 24 hours or donate $100 to ALS.

Only two and a half weeks ago, the first ALS challenge video was uploaded by 29-year-old former college baseball player Pete Frates, and inspired Justin Timberlake, Taylor Swift, LeBron James, and the entire Jets NFL team to participate in the cause. The ALS Association and its 38 chapters has received $22.9 million in donations since July 29, compared to the $1.9 million within the same time period last year, and money keeps coming in. Before the videos, half of the general public had never even known what ALS was, and now with 453,210 new donors, it has become a playful and meaningful way to spread awareness.

“The story right now goes: You’ve got ALS, have it for a little while, a long while, but either way, the end is always the same. ALS always wins. So in order to rewrite the end of it, we need to raise awareness: money,” Frates said in a Life Story Foundation video.

The challenge took on a different meaning for one ALS victim's son, who felt compeled to explain what happens to the body step-by-step in addition to donating to ALSA.org. Currently, there is no cure for ALS, and the one drug approved by the Food and Drug Administration to treat the disease only extends survival by two to three months, at best. Only 10 percent of patients diagnosed with ALS will survive for 10 years or longer; however, in almost all cases people eventually die of respiratory failure, while acutely aware of their failing and entrapping body.

“Imagine one day your legs stop working. You can feel them, but you can’t move them, and then your hands and arms stop working, and now you can’t move at all, even though you can still feel everything. So, if you have an itch somewhere, too bad you can’t scratch it. If your muscles get sore from sitting in the same position for too long, it’s too bad you can’t do anything. You’re stuck unless someone helps move your body for you,” he said.

Many have likened the disease to becoming a prisoner within their own body or to being buried alive with a fully functional mind. The disease attacks the spine’s nerve cells, muscles atrophy and lose function, losing your muscle movements, and the ability to speak, swallow and eventually breathe. It all leads to complete and devastating paralysis. The cause of ALS is currently not understood, and although there is a small five percent portion of those who have a genetic link to the disease, it seems as if it could strike anyone, but the overwhelming influx of donations may give those affected new hope.

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