Over a year ago, icy water inundated the Internet in what may have been the online equivalent of the largest chain letter ever—the ALS Ice Bucket Challenge. In endless Facebook videos, people hoisted buckets filled with ice water, announced their philanthropic intentions, and upended the buckets over their heads. Breathless, they would nominate a few friends, demanding that they do the same upon penalty of a charitable donation to ALS.
The Ice Bucket Challenge was immensely successful—a break-the-Internet phenomenon that spread all the way up to President Obama. But with this barnstorming success came an undercurrent of critical skepticism. Were people actually following through with donations? Was the campaign saying it was better to be cold and wet than a charitable giver? Was the stunt overshadowing the actual disease? Was the whole thing actually raising meaningful awareness? Twelve months down the road, here’s where things stand according to Charity Navigator.
How much money did the campaign bring in?
The national chapter of the ALS Association (ALSA) reports that, the challenge brought in a staggering $115 million. Participants also donated an additional $13 million to the association’s regional branches. As you might expect, these kind of numbers were unheard of for the ALSA—the charity’s Form 990 filings show they brought in $23.5 million in 2013.
How much has been spent so far, and on what?
The ALSA reports it has spent around $47 million of the $115 million raised thus far, with two-thirds allocated toward research in five different areas: gene discovery, disease model development, identification of biomarkers, clinical trials, and drug development. Some 20% of the money has been spent on patient and community services; the remaining 11% has gone to education, fundraising, and processing fees.
Is it bad that only $47 million of the $115 has been spent so far?
Charity Navigator gives a firm no. Since ALS is a disease with no known cure, the fight against ALS is largely focused on research. Eradication is more of a priority than palliative care, seeing as the disease is 100% fatal. In interviews with Charity Navigator, multiple chapters of the ALSA described spending plans of up to three years, because research often gets paid out over multiple years. And since one study frequently begets another, smart spending is even more important.
What concrete accomplishments can ALSA point to?
Direct patient and community services have produced most measurable results, since patient care is immediate and concrete. For example, the Palm Beach Post reported that the ALS Association Florida Chapter was able to hire a bilingual regional care manager.
Some progress has been made thanks partly to Ice Bucket Challenge research funding. Working with Ice Bucket money, researchers from Johns Hopkins University identified a protein that fails in the cells of most ALS patients, and showed that if they repair the protein, the damaged cell can heal.
It can take years or even decades for researchers to find scientifically proven treatments, let alone cures for deadly diseases, so donors may have to be patient to see what other results the ALSA-funded research yields.
Lots of money was raised, but what about awareness?
During the campaign, various people raised concerns that participants were more more caught up in the viral sensation than the cause, giving less money than a typical donor and often without even knowing much about the disease. There are two kind of donors, those who are deeply engaged in the cause, giving over many years, and those who respond to the social media wave.
Even if most donors don’t know what the letters “ALS” stand for or anything about the illness, it’s hard to look a $115 million gift horse in the mouth.