ALS, Ice Buckets, and A Whole Lot of Money

Article by Vania Brown,  Image  Source: Splashscore


Imagine waking up one day and having no control over your body. Suddenly you are not able to conduct everyday movements like walking, chewing, or breathing. For many diagnosed with Amyotrophic Lateral Sclerosis, these symptoms are commonplace.

ALS awareness month is swiftly approaching in May, offering a time of reflection and raising money for research. However, when people think of ALS, in many cases the neurological disorder comes second to the 2014 trend that swept social media, in the form of the ALS Ice Bucket challenge. People all over the world dumped buckets and ice water over their heads to raise money from the cause.

According to the National Institute of Neurological Disorders and Stroke, ALS, also known as also known as Lou Gehrig’s disease, “is a rare group of neurological diseases that mainly involve the nerve cells (neurons) responsible for controlling voluntary muscle movement.”

Brian Frederick, Executive Vice President of Communications and Development for the D.C. based non-profit, ALS Association, said the organization has several outreach events planned for May.

Frederick said, the ALS Association will launch a health awareness campaign on the first of month. The campaign, which extends to social media, will use the hashtag #ALSAware. It will be focused on the theme of living with ALS and will encourage people to empower themselves.

Frederick said the 2014 social media sensation initially reeled in around 17 million videos on Facebook alone, which welcomed about 2.5 million new donors to ALS. While the inventor of the challenge is widely recognized as former Boston College baseball captain Pete Frates, who has ALS, the origins of the ice bucket challenge, for ALS specifically, seem to trace back to Chris Kennedy, a minor-league golfer in Florida.

Frederick said, the organization still sees people doing the ice bucket challenge. While it may not be as trendy on social media as it once was, Frederick said supporters join in on the icey fun at marches. “We see people doing the ice bucket challenge at our walks to defeat ALS, doing them at company-run fundraisers to raise awareness and money and build office camaraderie.”

Kim Maginnis has been the Senior Vice President of Care Services of the ALS Association for five years. Maginnis works directly with people living with ALS. She also monitors services in place to assist those with the condition and works with clinical partners across the U.S. She said another aspect of outreach for ALS Awareness month is to educate people about the condition.

She said this month “gives us a tremendous amount of potential to build awareness and education to not only families living with this disease, but the general public.”

According to the ALS Association over $220 million was raised globally as a result of social media. Of the donations, $115 million went to the ALS Association.

“The money had the effect of enabling us to fund a wide number of projects that we had been hoping to fund,” Frederick said.

A large portion of the donations also went directly to research, which led to the discovery of, NEK1, a new ALS gene. The 2016 discovery sparked hope in the development of a new drug for ALS, which currently has no cure.

While not everyone who did the challenge donated to the cause, Frederick said the ALS Association was simply glad to see “people who were willing to get involved.” Frederick also said, “Everybody who partook, even if they just liked and shared the videos had a hand in helping spread awareness of ALS.

Frederick acknowledged that like many organizations, there are supporters who are extremely educated on the condition and may actually live with it, while others are less informed or are just familiar with ALS because of the ice bucket challenge.

Overall the ALS Association seeks to inform supporters with various levels of background knowledge on the condition. Frederick said, “We try to provide a bridge of communication to both those groups.”

“If we can help people be have a better ability to navigate through the disease and have support services and resources and help people then that’s a great thing.”

Article References: