The ALS Association (ALSA) is a non-profit, tax-exempt 501 (c) (3) based in Washington, DC whose mission is “to lead the fight to cure and treat ALS through research, advocacy, and care services.” Prior to 2014, ALSA raised about $20 million annually, allocated about $7 million to grants, and had about $20 million in net fund assets (which is also referred to as the endowment).
When the Ice Challenge went viral in 2014, ALSA received $115 million, a windfall for the organization that was primarily used to strengthen the endowment but to also increase grants awarded since research grants are key to understanding ALS in hopes of preventing, treating and curing the disease.
Since 2014 and subsequent to the Ice Challenge, ALSA has raised about $25-$30 million annually and allocated about $20 million annually to grants and about $10-$15 million to other expenses. The net result has been the erosion of the endowment from $120 million in 2014 to $90 million in 2018. There has not been significant investment income or gains on the sale of assets to offset the “overspending.” Read more
The ALS Association (ALSA) was chugging along raising about $20-25 million a year (with a $20 million endowment) when the Ice Challenge video went viral a few years ago (2014) and brought in $115 million in donations to the organization. But before we talk about what ALS did with the revenue windfall, it is important to know that ALS is a progressive disease that effects nerve cells in the brain and the spinal cord. Motor neurons from the brain reach muscles through the spinal cord. In patients with ALS, the motor neurons die so the brain cannot send communication to the muscles to move, leading to paralysis and death. Read more