ALS Ice Bucket Challenge – Dan Ellertson

cropped-alsheader1.png

#ChallengeALS
#IceBucketChallenge
#ALSicebucketchallenge

The ALS Association (ALSA) was founded in 1985 to help combat Lou Gehrig’s Disease, also known as amyotrophic lateral sclerosis (ALS). It was established as a non-profit and currently participates in research, assists people with ALS via national chapters of the organization, and partners with the government on projects related to the disease. The organization hopes their activity “builds hope and enhances quality of life while aggressively searching for new treatments and a cure.” In addition to its research and care services, the ALS Association has historically aided the process of public policy and education related to ALS. Leaders of the organization want global research on ALS, but they focus on the United States in terms of awareness and education. Chapters located throughout the United States are its channel to distribute information and help to those it aids.

The campaign was started by professional golfer Chris Kennedy as he was the first to accept the challenge. His brother-in-law has ALS, so he challenged his sister to complete the challenge. Through mutual friends on Facebook two men with ALS saw the videos and were inspired. They used their own social networks to launch the campaign to their friends, family members, and acquaintances throughout the country. Pat Quinn from Yonkers, New York, and Pete Frates from Boston, Massachusetts were the two men that many credit with jumpstarting the challenge. Kennedy is considered a co-founder as well. (ALSA)

In summer of 2014, the Ice Bucket Challenge kicked off and it became what ALSA calls the “world’s largest global social media phenomenon.” In its traditional form, it involves four steps as described by ALSA:

  1. ACCEPT: Accept the challenge;
  2. RECORD: Take a video of yourself dumping a bucket of ice water over your head to increase awareness of ALS;
  3. UPLOAD: Upload your video to social media, tagging/challenging at least three of your friends;
  4. GIVE: Make a donation to support the ALS community.

 

ALSA’s campaign seemed to hit its tipping point in the end of July 2014. It hit the social networks and went airborne. More than 17 million people uploaded challenge videos to Facebook and those videos topped 440 million views. Although Facebook was the more popular medium to post the videos, other platforms like Twitter and Instagram helped project it significantly using the hashtags #ChallengeALS, #IceBucketChallenge, and #ALSicebucketchallenge. (ALSA)

 

Overall, the initial goals of the campaign were very much tied to ALSA’s general mission. The campaign was just a new and creative way to project its mission to the masses. A major goal of the campaign was to spread awareness about ALS. Approximately 6,400 people are diagnosed with the disease each year and as much as 20,000 people in the United States could have it at any given time. The average life span is 3-5 years after diagnosis. Many people had no idea what the disease was before the campaign. (ALSA)

Awareness was the first step, but a big goal was to encourage people to donate to the cause. Before the Ice Bucket Challenge, the ALSA had a $20 million yearly budget for research, patient care, and education. The goal was to triple that for the particular year. It was hoped that donations would speed up the process of finding a cure. Much of the funds were designated ahead of time to go straight to treatment as well. In addition, the ALSA hoped that the exposure would help power public policy related to those with ALS. (ALSA)

The campaign’s participants were extremely diverse in age, social status, and location. At first, it spread through Facebook and reached mostly ordinary citizens. However, the movement soon spread. It gained more steam when the famous folks with an arsenal of followers began to participate. Music artists, actors, professional athletes, politicians, and more joined in and encouraged their fans to do the same.

 

In reality, the end goal was and is to find a cure. Until one is found, the mission will never be complete. That said, organizers believe the campaign was an incredible success. Although statistics don’t always show the whole picture and can’t be the only measure of success, it is fair to say that many of the goals were achieved. In a six-week period starting in the beginning of July 2014, $115 million dollars were raised. That is nearly double what their goal was and most of it came directly through the website. A total of $13 million came from donations directly to regional branches (Time). The money was put straight to work. Because the survival time is so small after diagnosis, much of the money went to research. Here is a full breakdown of how donations were used:

This photo breaks down the spending of the money raised from the Ice Bucket Challenge.
This photo breaks down the spending of the money raised from the Ice Bucket Challenge.

Many stories about the little things from patients and workers within the ALSA have surfaced that help back up those who feel the campaign was successful. For instance, the Florida chapter of the organization was able to hire a bilingual regional care manager to make it easier for patients who speak little English or none at all. ASLA lead researcher Jonathan Ling addressed those who tried to downplay the help the campaign could bring in an interview last month: (Time Magazine)

“I remember reading a lot of stories about people complaining that the ice bucket challenge was a waste and that scientists weren’t using the money to do research, etc. I assure you that this is absolutely false. All of your donations have been amazingly helpful and we have been working tirelessly to find a cure. With the amount of money that the ice bucket challenge raised, I feel that there’s a lot of hope and optimism now for real, meaningful therapies. After all, the best medicines come from a full understanding of a disease and without the financial stability to do high risk, high reward research, none of this would be possible.”
–Jonathan Ling, ALSA’s lead researcher. (Reddit)

Ling’s claims were backed up when it was announced that researchers at Johns Hopkins University made an important discovery using funds from the Ice Bucket challenge. Researchers there were able to discover a protein that breaks down in the cells of most ALS patients. Research also shows that the cells can heal if the protein is removed. (Time Magazine)

The campaign was successful in many aspects of what it wanted to do. The overarching goal with any fundraising campaign for ALS is still to find a cure, and that is a goal that may take ALSA several years to achieve.

Now, the event is an annual event that will take place every summer to raise money. Co-founders Quinn and Frates can be seen in the following video announcing the return of the campaign for 2015.

Critics:

“Some people didn’t even know about ALS—it just became Ice Bucket Challenge.” –Charity Navigator’s Acting COO Tim Gamory

Gamory’s claim is supported by a poll by the World Health Organization. The poll showed that 98% of Ice Bucket Challenge participants still didn’t know what ALS was.

Google did show a big uptick in searches for ALS, however:

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Google Trends shows ALS searches increased rapidly during the Ice Bucket Challenge campaign.

 

 

 

 

 

Jacob Davidson, whose father passed away from the disease when he was just a boy, was unimpressed with the campaign’s tactics. The TIME news editor feels it succeeded in garnering the attention of the nation, but that it didn’t accomplish its goal of truly spreading awareness. He shares the view of many critics that for most people, it was just about jumping on the bandwagon and doing something fun on social media. Davidson has a point when he notes that Ethel Kennedy and Today’s Matt Lauer participated in the Ice Bucket Challenge very publicly without a single mention of ALS. (TIME)

Critics also attacked the amount of water unnecessarily wasted in the Ice Bucket Challenge videos. Although the ALSA offers suggestions for alternatives to water on their website, virtually no one used them. Additionally, critics of the campaign did not enjoy the more theatrical videos that wasted money and water that could be donated such as this one:

A score of social media users got behind actor Charlie Sheen when he posted a video calling out those who just participated in the campaign for fun and didn’t donate anything. He pledged a donation of $10,000, which he confirmed by dumping the cash on himself instead of water. This is the point when certain groups of Facebook users started to negatively speak about the campaign for the flaws Sheen pointed out.

There is another argument that began to surface from critics of the campaign after its completion last year. Vox editorial reporter Julia Belluz wrote an article arguing that Americans donate to charities that affect the least amount of people. She shows statistics to back up her claims in the diagram below:

alsfundingcriticdiagram

This year’s figures have not been released yet, but it is clear looking at the three hashtags related to this challenge that the campaign has lost quite a bit of steam. It seems that it failed to become an annual event of the magnitude it was in 2014, but the ALSA is still less than halfway through the money earned from last year’s campaign. The non-profit is certainly spending gradually.

The critics still allege that many participated in the event for fun and didn’t gain any awareness about ALS. However, the amount of funds and progression previously mentioned regarding the discovered failed protein have swayed most critics to accept the campaign as a success. $115 million in six weeks is hard to ignore when speaking about the campaign’s success.

 

 

References

“About Us.” ALSA.org. ALSA, n.d. Web.

“ALS Ice Bucket Challenge – A Global Movement to Find A Cure.” ALSA.org. ALSA, 2015. Web.

Belluz, Julia. “The Truth about the Ice Bucket Challenge: Viral Memes Shouldn’t Dictate Our Charitable Giving.” Vox. Vox Media, Inc., 20 Aug. 2014. Web.

Davidson, Jacob. “We Need To Do Better Than the Ice Bucket Challenge.”Time. Time, 13 Aug. 2014. Web.

“#IceBucketChallenge Leaves Scottish Island without Water, Highlighting Worldwide Scarcity Problem.” RT English. Autonomous Nonprofit Organization, 28 Aug. 2014. Web.

Lang, Brian. “3 Biggest Criticisms of the Ice Bucket Challenge.” Small Business Ideas Blog. LinkedIn, 2 Sept. 2014. Web.

Ling, Jonathan. “Science AMA Series: Hi, I’m Jonathan Ling, a Researcher That’s Here to Share Our New Breakthrough Discovery for ALS (amyotrophic Lateral Sclerosis) • /r/science.” Reddit. Reddit Inc., 2015. Web.

Townsend, Lucy. “How Much Has the Ice Bucket Challenge Achieved? – BBC News.” BBC News. BBC News Magazine, 2 Sept. 2014. Web.

Wolff-Mann, Ethan. “What Happened to the Money Raised From the Ice Bucket Challenge.” Time. Time, 21 Aug. 2015. Web.

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ALS Ice Bucket Challenge – Dan Ellertson

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