Two summers ago, Facebook pages across the country were saturated with videos of people dumping buckets of ice water over their heads in a fundraiser for ALS, the fatal neurodegenerative disorder popularly known as Lou Gehrig's disease.
At the time, the Ice Bucket Challenge was derided by many as little more than a marketing gimmick, a feel-good way for celebrities and others to appear altruistic without having to do much of anything. Critics pointed out that many of those who posted videos never even mentioned the disease or how to help the cause.
But for hundreds of Minnesotans afflicted with ALS, it turns out the viral campaign was far more than just a fad. The challenge raised $115 million worldwide, and using its portion of that, the regional ALS Association has acquired nearly 130 pieces of medical equipment, from shower chairs to robotic feeding arms, filling ALS "loan closets" from Brooklyn Park to Fargo.
People who had languished for a year or more, waiting for gear that would enable them to live more independently, can now get a key piece of equipment delivered to their doorstep within days.
The equipment purchase is perhaps the most tangible impact of a fundraising campaign that has wildly exceeded all expectations. Earlier this week, the ALS Association announced that money raised from the Ice Bucket Challenge helped scientists identify a new gene, called NEK1, found to be among the most common among people afflicted with ALS. Money raised from the challenge is also funding drug development, with as many as four new drug therapies expected in the next three to five years. By comparison, only one drug for ALS came to market in the previous three decades, and that drug, Rilutek, extends the patient's life for an average of only 60 days.
The impact has been so profound that ALS patients, who number about 400 in Minnesota and 30,000 nationwide, now commonly use the phrase, "Pre-Ice Bucket" and "Post-Ice Bucket" to describe their battle with the disease, for which there is still no cure.
Before the challenge, it was common for people with ALS to die while waiting for crucial equipment. People with the disease rapidly lose their ability to control muscle movement, and their condition can shift dramatically from weakness and limited mobility to complete paralysis. Most patients die within two to five years, and an equipment delay of even a few months can be devastating.
"To have to tell a family with someone who only has a year or two left to live that they have to wait for a piece of equipment was absolutely heartbreaking," said Jennifer Hjelle, executive director of the regional chapter of the ALS Association. "Now we can help those people live out the rest of their lives in dignity."