Shiver inducing videos of friends, family, celebrities, and everyone in between pouring buckets of ice water over their heads for ALS have been flooding social media these past few months. However, the event itself raises more questions about where the money goes, what ALS is, and how the challenge relates to the disease.
It’s likely you have either been nominated, actually performed the ALS ice bucket challenge, and maybe even donated to charity as well. While many have a broad understanding about what the challenge aims to help fund, not many know the details.
ALS, also known as Lou Gehrig’s disease, is a progressive neurodegenerative disease. This means that it affects neurons in the brain, specifically those that are responsible for movement, causing muscles in body to become smaller and weaker over time. Every function in the body controlled by these motor neurons, including everyday tasks such as walking, running, and even breathing, are affected and eventually become nearly impossible. The process of diagnosing ALS is lengthy and varies from person to person. The disease can cause symptoms that are very similar to diseases such as Parkinson’s or a stroke, making it difficult to give an early, precise diagnosis. What is more difficult than diagnosis is treatment; currently there is no treatment for ALS, though there are a variety of drugs available to people affected by the disease to help control symptoms and make life with ALS easier.
ALS, like many other diseases, is clearly one that not only greatly affects the lives of the individuals who have it but also their family and friends. So why are we only hearing about it now? Prior to the ALS Ice Bucket Challenge, there were previous fundraising attempts for the cause. Things such as Walk to Defeat ALS were occasional, but nothing as powerful as the ice bucket challenge we see today. The ALS Ice Bucket Challenge first received media attention in the United States around the end of June this year, and its unique usage of social media as a medium to institute change proved quite successful. The hosts of the Golf Channel’s Morning Drive performed the challenge live, and from there it has only grown. It was brought to more mainstream audiences by Matt Lauer from NBC’s The Today Show in July. The challenge continued to gain more and more traction, with high profile celebrities and politicians such as LeBron James and former U.S President Bill Clinton partaking. However, some individuals, such as President Barack Obama, opted out of doing the challenge and instead choose simply to donate money to the cause.
Still, why the ice bucket challenge? There are many different types of fundraising that involve social media, so what significance does the ice bucket challenge have to ALS? When the participant pours ice water over himself or herself, it causes their whole body to feel numb. This sensation allows the participant to feel what its like to have the numbness that ALS patients feel when they are diagnosed. The purpose of the challenge is to allow the participant to empathize with ALS patients, hopefully increasing the incentive to donate to the cause.
There’s not doubt that the ALS Ice Bucket Challenge has been successful. As of August 29th donations have reached $100 million, resulting in a 3,500% increase in donations from the $2.8 million raised in the same time period last year. For comparison, it took Livestrong a whole year to raise $50 million, half of the donations from the Ice Bucket challenge, after they released their cancer-awareness Livestrong bracelets ten years ago. Social media has become a key factor in fundraising, accelerating its global coverage much faster than ever before.
Now that the ALS Association has raised all these funds, where does it all go? For a disease like ALS, it’s tricky. Unlike some diseases there are no treatments to fund. Also, ALS does not have some of the exposure that other diseases do. It’s defined as an orphan disease, as only two out of 100,000 people have it. When compared to a disease such as breast cancer, which affects one in eight women in the United States, ALS seems far less pervasive. For pharmaceutical companies, there is little incentive to use their resources to find a treatment, as the market is neither large nor lucrative. Yet if it doesn’t go to treatments, then where do the donations go? According to the ALS Association’s CEO and president Barbara Newhouse, the donations go towards, “helping people with ALS and their families and caregivers in the battle against the disease, while resolutely pursuing all avenues to extend, improve and ultimately save lives.” Although donations might not go directly to finding a cure, when you donate the money to the ALS Association, it is working to make life more comfortable for those who are affected by ALS and finding a treatment.
Although ALS may not affect large amounts of people, the disease can be terrifying for those it does affect. Nevertheless, there is still controversy over the challenge. Many people dispute whether the money actually does anything, or argue that the water used might be supportive for one cause but detrimental to the environment. Ultimately, whether you choose to donate or participate in the challenge is yours, and everyone’s, individual choice.