Have you seen a bunch of videos in which people have buckets or ice water thrown all over themselves online recently? Of course you have — the ice bucket challenge is hard to miss for anyone who uses the internet. George W Bush, Jennifer Lopez, Katy Perry, Ana Ivanovic and George Takei all participated in the ice bucket challenge, along with numerous others.
You may have heard that the challenge was created to raise awareness of and funds for the cure of a disease called ALS. That's amyotrophic lateral sclerosis, also often called Lou Gehrig's Disease. The ALS Association raised nearly $16 million between July 29 and August 18 as a result of the campaign. That's almost as much as the association raised during the whole of 2012, and more money is still being raised all the time.
What's the whole thing really about though? Many people are enjoying seeing their favorite athletes, musicians, actors and politicians being soaked with a bucket full of icy cold water, and plenty of people who aren't public figures are also taking part in challenge. Let's not forget that the ice bucket challenge has multiple goals though. One is to raise money for ALS research, and the other is to spread awareness of the disease.
What Is ALS?
Amyotrophic lateral sclerosis is a progressive and devastating neurodegenerative disease. Affecting nerve cells in the brain and spinal cord, ALS gradually robs patients of their independence and quality of life.
Early ALS symptoms include muscle weakness, muscle cramping or stiffness, and trouble swallowing and speaking. Respiratory difficulties will appear first in a smaller number of patients. With time, mobility is increasingly lost and swallowing, speaking and breathing become more and more difficult. Most ALS patients are eventually unable to walk or move their arms.
Eating becomes an almost impossible task that carries the risk of choking or aspiration into the lungs every single time. In the end, ALS can progress to a stage where patients cannot move, talk, or even breathe.
Between 15 and 45 percent of ALS patients will also experience pseudobulbar effect, a neurological disorder caused by the disease's destruction of bulbar upper motor neurons. This neurological disorder leads to uncontrollable laughter, smiling, or crying.
Around 20 percent of people diagnosed with ALS will live five years or longer, while up to 10 percent will still be alive a decade after diagnosis and five percent will live with the disease for 20 years or more. World-famous physicist Steven Hawking has lived with the condition for over 50 years, an extremely rare occurrence.
Why Does The Ice Bucket Challenge Matter?
The exact cause of ALS remains unclear. Around 5,600 US residents are diagnosed with the disease every year, and patients' quality of life varies enormously. The palliative care that is currently available is often immensely expensive to patients themselves. The first drug to slow the progression of ALS was approved by the FDA in 1995.
The ALS Association is working to find more effective treatments that will improve patient's quality of life and help them stay independent for as long as possible. This isn't going to happen without funding. The ALS Association already helped fund research into the genetic causes of the disease and the clinical trial of a revolutionary new drug, but so much more needs to be done.
ALS patients complain that research into their disease is not profitable for pharmaceutical companies. They have little hope for improvement. People on the internet, meanwhile, are already becoming fed up with the ice bucket challenge. Some complain that pouring cold water over people's heads isn't serious, and ALS is not a laughing matter. Others are concerned that the challenge isn't raising enough money or isn't getting money to the appropriate place. Yet others are simply bored with seeing people doing the challenge.
Anthony Carbajal, a 26-year old young man who was just diagnosed with the disease that also struck his grandmother and mother, explains why the ice bucket challenge matters. His YouTube video shows him, still a relatively healthy man though the disease is already affecting his daily life, take the challenge himself. Overcome by emotion, he then shows how ALS is affecting his mother — she cannot move or talk and needs assistance with breathing.
Imagine seeing your mother wither way in this heartbreaking manner, knowing that the same thing is in your own future. ALS sucks. For the first time ever, Carbajal explains, people are talking about it. Perhaps the funding raised as the result of the ice bucket challenge will help him one day. In the meantime, people are at least becoming aware of what it means to have ALS.