ALS: The Inspiration Behind The Ice Bucket Challenge

Medically reviewed by Leigh Ann Anderson, PharmD. Last updated on July 19, 2023.

As you probably know by now, there’s no better cure for your bad hair day than the Ice Bucket Challenge.

What was the Ice Bucket Challenge?

The Ice Bucket Challenge was a disease awareness and fundraising campaign from August 2014 that took social media by storm. It's purpose? To raise awareness of Amyotrophic Lateral Sclerosis (ALS). The donations "poured" in.

By Thursday, August 21, the ALS Association and their nationwide network of chapters reported having received over $41 million in donations since July 29th, compared to just $2.1 million from the same time period the previous year. In addition, over 739,000 new ALS donors were registered; no doubt most involved in the Ice Bucket Challenge phenomenon themselves.

Everyone jumped on the bandwagon: from basketball sports legends like LeBron James, to The Tonight Show host Jimmy Fallon, to former President George W. Bush, the viral list kept growing.

Most importantly, neighborhood citizens joined in as well, to learn more about a devastating and fatal disease and help to make a difference.

The challenge itself was pretty simple:

• Grab a large bucket of ice cold water and dump it on your head, videotape the event to splash across social media sites, and then nominate three others to take their own challenge within 24 hours.
• In turn, people could accept the challenge and designate their own nominees, or they can make a donation to an ALS organization of their choice. As one would expect, many generously accepted both challenges.

Unlike breast cancer or heart disease, ALS was not a familiar disease for many of the newfound ALS supporters. In fact, according to The ALS Association, only about 50% of the nation was familiar with ALS, also known as Lou Gehrig's disease, prior to the Ice Bucket Challenge. Lou Gehrig, a beloved American baseball legend who played with the New York Yankees for 17 seasons, died of ALS complications in 1941.

The Ice Bucket Challenge was started by none other than a former Boston College baseball player and director of baseball operations, Pete Frates. Frates, who also had ALS, started the challenge with friend Pat Quinn from Queens, N.Y., who also suffers from the ailment. Sadly, Frates passed away in December 2019 at age 34 following his hard-fought battle with ALS.

What is ALS?

• ALS is a fatal disease with no cure. Approximately 5,600 people in the U.S. are diagnosed with ALS each year.
• ALS leads to a slow degeneration of nerve cells that control muscle movements and an eventual loss of muscle control.
• Muscle wasting, paralysis, and loss of vital functions such as speech, swallowing, and breathing eventually occur.

ALS plays no favorites -- it can strike anyone. Although the cause of ALS remains unknown, some cases appear to be inherited as certain genes may increase the risk of developing the illness. The neurodegenerative disease usually strikes patients between 50 and 70 years of age, and affects men slightly more often than women. The average life expectancy of an ALS patient ranges from two to five years from the time of diagnosis, although roughly twenty percent of patients may live longer, according to the ALS Association.

Today, newer medications are being approved for ALS. When the Ice Bucket Challenge was run, the only available treatment was riluzole (Rilutek, Exservan, Tiglutik), which blocks the nerve cell messenger glutamate. It is not a cure for ALS, but may delay disease progression and extend survival. Since them several new options are available for ALS:

• edaravone (Radicava, Radicava ORS) - approved in May 2017
• sodium phenylbutyrate and taurursodiol (Relyvrio) - approved in Sept 2022
• tofersen (Qalsody) - approved in April 2023 

Awareness and education are key to promoting research for an ALS cure. Donations support studies and new treatments, but also help to provide services for people with ALS, which can be a costly burden to their family.

For more information:

Visit the ALS Association to learn more facts about ALS and make your donation today.

Further information

Always consult your healthcare provider to ensure the information displayed on this page applies to your personal circumstances.

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