In the summer of 2014, the ALS Ice Bucket Challenge took social media by storm. Aimed primarily at raising awareness of the disease, the effort resulted in marked increases in spending on amyotrophic lateral sclerosis (ALS) research, an independent study shows.
According to the report by RTI International, a nonprofit research institute that helps entities objectively analyze programs and their impact, some $115 million in donations to the ALS Association allowed it to increase annual global research spending by 187%.
Since the challenge, there have also been upticks in collaborations, scientific advancements, and federal research funding, as well as expansions in care, according to a press release from the ALS Association, the world’s largest private funder of ALS studies.
Created by three men living with ALS, the challenge encouraged nominated participants to make a video of themselves having a bucket of ice water poured on their heads, after which they nominated others to complete the challenge. The informal rule was that nominees had 24 hours to follow suit or else they had to donate to charity. More than $220 million was donated to ALS charities worldwide.
“Five years after the Ice Bucket Challenge soaked the world, the pace of discovery has increased tremendously, bringing ALS researchers closer than they have ever been to real breakthroughs in diagnosing, treating, and eventually curing this disease,” said Calaneet Balas, the ALS Association’s president and CEO.
To understand the impact of the challenge, RTI evaluated the organization’s grant and National Institutes of Health (NIH) records, data from challenge-funded scientific projects, and surveys of ALS investigators globally.
Funds generated from the challenge had a direct effect on the search for ALS treatments and cures, according to the ALS Association, including the discovery of five new disease-related genes. Funding also helped pay for new clinical trials, and resulted in a 50% expansion in the association’s clinical network.
Hemali Phatnani, director of the Center for Genomics of Neurodegenerative Disease at the New York Genome Center, called the Ice Bucket Challenge transformative in the field of ALS genomics.
”We built one of the largest resources of ALS whole genome-sequencing data,” Phatnani said. “This resource has been shared with partners all over the world. It has accelerated the pace of ALS gene discovery, and has led to the largest ALS sequencing study in the United States.”
Between 2014 and 2018, the ALS Association pledged nearly $90 million in global research funding, including $81.2 million across 275 research grants in the United States and another $8.5 million abroad. During the same time period, collaborations among the association’s global network of scientists rose from 71 to 471. Such awards and partnerships helped foster increased knowledge of the disease, RTI reported.
“Researchers funded by the Association collectively increased their scientific output by 20 percent, measured by the annual count of published journal articles authored by at least one grantee,” said Sarah Parvanta of RTI. “This number is expected to increase once all published articles from 2018 have been catalogued in bibliographic databases.”
Since the Ice Bucket Challenge, the NIH has invested nearly $416 million in ALS Association-funded researchers. The organization has also increased its network of clinical providers from 100 in 2014 to its current 156.
When asked by RTI about the challenge’s impact on investigations, 84% of researchers said the association’s support had advanced their work “quite a bit” or “very much,” while 72% said this support had improved their ability to gain more funding.
“Thank you to every single person who took the challenge five years ago,” Balas said. “All of you are stakeholders in the progress we have made.”
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