After ALS Went Viral

In 2014, the world’s attention turned to amyotrophic lateral sclerosis (ALS) as droves of people joined the now famous Ice Bucket Challenge. The Challenge was designed to bring attention and new funding for this fatal illness which destroys motor neurons in the brain and spinal cord. The Challenge asked people to make a donation to an ALS organization or dump a bucket of ice water on themselves (many did both). And most importantly, participants had to capture the dunk on video, post it to social media, and challenge three friends to do the same.

After it went viral, the Ice Bucket Challenge raised more than $200 million in just eight weeks from donors across the world. Facebook reported that more than 2.4 million users posted videos with the Ice Bucket Challenge tag.

It was a fundraising success, but the story of what happened after ALS went viral involves frustrated patients and advocates and raised questions about whether internet fundraisers are a sustainable source of income for charities.

Last year, Vox reported some of the pitfalls charities can fall into when they’re suddenly handed a one-time lump sum of cash—with no plan for how to spend it.

Last year, a group of ALS advocates frustrated with the slow progress getting new ALS medicines in the hands of patients planned to protest in Washington. They blamed the FDA for taking too long to approve new experimental therapies and accused the ALS Association (ALSA), one of the largest ALS non-profit organizations that received the most money from the Ice Bucket Challenge, of not exerting pressure on the FDA to expedite approval of ALS medicines. Like the ACT UP activists from the 1980s enraged by the carnage of the HIV/AIDS epidemic, the ALS protesters hoped to inspire action. The ALS protesters frustration was fueled by new treatments that have been slow to arrive and increase survival only modestly.

While it wouldn’t have been the first time a charity failed those its meant to help, the way ALSA spent the influx of cash was actually relatively responsible.  ALSA received $115 million in donations from the Ice Bucket Challenge in 2014, twice the amount they raise in a typical year. Of the $115 million, ALSA spent more than $89 million on research that led to important findings and improved treatments. Their research investment areas included genetics, stem cells, disease mechanisms and models, biomarkers, and assistive technology.

The rest of the money went toward their other big priority—helping patients who currently have the disease pay for treatment or live more comfortably. For example, some ALSA chapters bought equipment to lend to ALS patients, like wheelchairs, walkers, and shower benches. Before the Ice Bucket Challenge, patients had to join a waitlist to borrow the items. Other chapters invested in technologies that make it easier for patients with ALS to communicate through small movements like blinking or tapping.

While investing in research is critical for developing novel therapies and potential cures, it is far from satisfying to patients desperate for therapies that could improve or lengthen their lives. But it can take years to make a breakthrough therapy and even longer to get through all the phases of testing required to gain FDA approval. While ALSA didn’t find a cure, it invested its new and sudden research funding sensibly. Still, less than one percent of Ice Bucket Challenge donors repeated a donation.

Photo by NeONBRAND on Unsplash