Everything You Need to Know about the ALS Ice Bucket Challenge

A boy dumps water from a bucket over his headUnless you completely avoid all social media, you’ve probably seen dozens of friends, family, and celebrities dumping buckets of ice water on their heads, often while talking about amyotrophic lateral sclerosis (ALS). This public outreach campaign, known as the ice bucket challenge, endeavors to raise awareness about a condition with devastating psychological and physical symptoms. 

What Is ALS?

Also known as Lou Gehrig’s disease, amyotrophic lateral sclerosis (ALS) claimed the life and career of the famed baseball player who held the record for most consecutive games played for 56 years. ALS is a degenerative condition that steadily kills nerve cells in the brain and spinal cord. Over time, the death of these cells interferes with the brain’s ability to coordinate the body’s movements, and frequently leads to paralysis. People with ALS may also lose the ability to speak, control their excretory functions, or independently control their breathing.

The course of the disease is unpredictable and there is currently no cure. Some people succumb after just a few years, but others live for many years with ALS. Treatment focuses on treating symptoms and prolonging life. Some people with the illness have slowed the progression of their disease with experimental treatments or lifestyle changes, but treatment results vary greatly from person to person.

As with any chronic or terminal illness, ALS is more than a physical health challenge. A diagnosis of ALS carries an emotional toll, too, which may affect a person’s mental health. The steady loss of control over one’s muscle movement may leave a person feeling helpless, afraid, anxious, or angry, and could lead to depression and feelings of grief.

In addition, sometimes ALS can lead to cognitive impairment (CI) that affects a person’s thinking and behavior, and a minority of people with ALS may be diagnosed with a form of dementia called frontotemporal lobar dementia (FTLD). People displaying cognitive changes may become more aggressive, unusually cheerful or childish, or obsessive about specific activities or ideas. 

What Is the Ice Bucket Challenge?

The ice bucket challenge is largely a social media phenomenon. Participants nominate friends by tagging them or naming them in a video. Nominees can then choose between donating $100 to an ALS charity or dumping a bucket of ice water on their heads. Some participants opt to do both, and participants who opt to dump ice on their heads typically film the experience and post the video on Facebook. 

The challenge began with the family of Pete Frates, a former baseball player and Boston College captain who has ALS. The number of people participating in the challenge has grown exponentially. Celebrities are rapidly joining the ranks, from Lady Gaga to Oprah Winfrey, as are entire sports teams, including the New York Mets. Business leaders such as Bill Gates and Mark Zuckerberg have also taken the plunge, as have notable politicians such as former president George W. Bush.

Is the Ice Bucket Challenge Helping?

The ice bucket challenge has received some backlash, particularly since the original challenge decreed that participants would dump water on their heads if they weren’t donating. Arielle Pardes of Vice, for example, called it “narcissism masked as altruism,” and pointed out that other forms of hashtag activism have quickly died off.

Many ALS advocates, though, endorse the challenge. Amy Phillips, whose dad died of ALS, encourages people to participate in the challenge, if only to raise awareness of the disease, which has historically received very little media attention. The ALS Association says the challenge has raised an unprecedented $41 million dollars to date.

If you’re interested in participating, find a reputable ALS charity, such as the ALS Association, and be smart about water conservation. If you live in an area with restricted water usage, reuse the water or consider donating money without creating an ice bucket video. The ALS Association offers many other opportunities for donors to get involved in the fight against ALS.

References:

  1. ALS and cognitive changes: A guide for patients and families. (n.d.). Retrieved from http://www.alsa.org/als-care/resources/publications-videos/factsheets/cognitive-changes-family.html
  2. Harris, Diane. (2014, August 19). How to Give Smarter in an ALS Ice Bucket World. Retrieved from http://time.com/money/3144733/smart-charitable-giving-als-ice-bucket-challenge/
  3. Ice bucket challenge. (n.d.). Retrieved from http://www.alsa.org/fight-als/ice-bucket-challenge.html
  4. New, C. C. (2003, January 1). ALS: A disability or a fatal disease? Retrieved from http://alsn.mda.org/article/als-disability-or-fatal-disease
  5. What is ALS? (n.d.). Retrieved from http://www.alsa.org/about-als/what-is-als.html

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  • miller

    miller

    August 22nd, 2014 at 3:48 AM

    yeah it did seem pretty silly when people were doing the challenge and it seemed that they were doing it to avoid making monetary donations, but it has kinda grown past that and most people i see now are doing the challenge and making a donation as well. that’s a pretty cool evolution of the challenge i think

  • Ben

    Ben

    August 22nd, 2014 at 11:33 AM

    I think that this has been an excellent way to raise awareness about this disease whic causes so much pain and heartbreak to those who suffer ans well as the family members who have to sit helplessly and watch it happen. I am glad that there is now more education about it and hope that this translates to raising awareness about other causes too. May have started as PR stunt that no one knew if it would succeed, but I think that it has done its primary job.

  • Triciia

    Triciia

    August 22nd, 2014 at 2:41 PM

    thank you for the gentle reminder to conserve water when you can and if this doesn’t mean doing the challenge then making a donation instead is perfectly acceptable.

  • beck

    beck

    August 23rd, 2014 at 5:41 AM

    I read something this morning that showed how much more money had been given this year than last, all attributable to this challenge that has been going aorund. Who cares what the reasons are for giving the money, that is getting money out there for research purposes and I don’t think that any families who have lost someone to this terrible disease would ever complain about that.

  • Sacey E.

    Sacey E.

    August 23rd, 2014 at 11:33 AM

    This is clearly such a good cause- why is there all of this talk going around that people are doing it for the wrong reasons?
    My thoughts would be that okay, maybe some people are but I also think that there are those who genuinely care about the cause and want to do something meaningful to make a difference.
    So maybe this isn’t the cause that you would support. Perfectly fine.
    Why not take the ice bucket donation and do it for another cause or charity? I don’t think that there would be anyone who would think less of you for that.

  • Phil

    Phil

    August 25th, 2014 at 10:49 AM

    Sometimes we need a little something exciting to light our fire and I think that this is what the ice bucket challenge is doing. You can do it or not, give or not, personal choice. But that does not stop the fact that there are many others for whom this was the motivation that they needed to feel a part of something and to actually try to raise aware ness and do something. I applaud the efforts, as well as anyone who has participated. It made me stop and think about what I am doing with my life and showed me a way to get involved in something that I previiously knew very little about.

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