What Was All That Ice Bucket Challenge Money Actually Used For?

Remember the Ice Bucket Challenge of 2014? The charity campaign combined donating to potentially life-extending medical research with pouring a large bucket of ice water over one’s head during the month of August. Three years ago, the Challenge raised more than $100 million worldwide for amyotrophic lateral sclerosis (ALS), but what did that money actually do?

The rules of the Challenge varied: Participants were either supposed to donate money to support ALS research, or film themselves dumping water over their heads. Some variations required that they do both, but participants were to challenge three friends to take part. The tagging was important, since it meant being called out in “public.”

The ALS Association in the United States raised $100.9 million from 3 million separate donors during the month of Aug. 2014 alone, and a total of $114 million from the challenge. What did it do with the cash influx?

STATNews reports that the grants went to support both current and future patients. Benefiting both groups, most of the money was dedicated to medical research.

One of the most important findings was a gene, NEK1, which is associated with about 3% of ALS cases. The ALSA funded the scientists who identified the gene with grants from its Ice Bucket Challenge haul, and is now performing research on mice. One potential path could be using what researchers learn from what this gene does to cells in drug discovery. Grants have also gone to drug research, moving promising substances along the path to human trials.

Across the country, the ALSA funded $23 million of local grants to help patients and their loved ones, including things like speech therapy, making homes wheelchair-accessible, buying assistive devices like iPads for communication, and programs for caregivers.

A grant from the Ice Bucket Challenge money is also funding research into technology, working on better assistive devices, creating devices that let people control tablets and even home robots even though they can’t move.

Another important piece of research that the money funded was searching for biomarkers. That’s some kind of substance in the body that would indicate how far the disease has progressed in a given patient.

In different projects, researchers are collecting and testing blood and skin samples from people with and without ALS, and building and testing repositories of fluids and tissues taken from people who have since died of the disease.