A month ago, the National Institutes of Health was the single largest source of research funding for amyotrophic lateral sclerosis, or ALS, in the world.
Now, it’s a bunch of people dumping buckets full of ice water over their heads.
The ALS Association said Friday it has received more than $100 million in donations from people around the world in the last 30 days thanks to the ultra-viral Ice Bucket Challenge. The organization received $2.8 million during the same period last year. That’s a whopping 3,500 percent increase.
The summer’s donations have eclipsed the amount of funding the NIH, a federal facility, receives each year for research for ALS, a progressive neurodegenerative disease. The $100 million is more than double the amount the NIH received for research in 2013 ($39 million), and the amount it is projected to receive in fiscal year 2014, which ends next month ($40 million).
Annual federal funding for ALS has decreased steadily in the last few years, from $59 million in 2010 to $40 million today. The decline is thanks to the Budget Control Act of 2011, which was passed to protect the U.S. from default. The legislation delivered across-the-board budget cuts of about 5 percent in various federal agencies, including the NIH and its National Institute of Neurological Disorders and Stroke program.
More than a dozen lawmakers from both parties have received criticism for voting for the 2011 law and participating in the Ice Bucket Challenge this summer. But the seemingly contradictory decisions don’t exactly make them hypocrites, explains The Huffington Post‘s Sam Stein:
Many of them reluctantly cast that vote, and others are fine with funding ALS research so long as the funding comes from private sources and not federal taxes. But the contradiction does expose the curious ways in which government officials often end up dealing with problems they created.
Thanks to the Ice Bucket Challenge, private sources, like yet another one of your Facebook friends, are picking up the tab where the government can’t.
There is no cure for ALS, and there is only one drug for the disease approved by the U.S. Food and Drug Administration. The ALS Association said Friday that the group will put donations from the Ice Bucket Challenge toward research and patient care. “We recognize a profound sense of urgency and are engaged in discussions about how we’re going to put this money to work in the short term and into the future,” ALS Association President Barbara Newhouse said in a statement.
About 5,600 people are diagnosed with ALS in the United States each year. Most die within two to five years.