Two years later, Ice Bucket Challenge yields huge dose of hope for Minnesotans with ALS

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."

Linda Leight, 64, felt increasingly isolated in her New Brighton home after she was diagnosed with ALS in late 2013. Medicare, the giant government health program, would pay for only one mobile device over the course of her illness, which meant that she had to be selective. If Leight requested a basic scooter to get around now, then Medicare likely would deny her the more customized power wheelchair that most ALS patients need later as the disease progresses.

Rather than gamble with Medicare, Leight put her name on a waiting list through the ALS Association for a motorized scooter, only to discover that she would have to wait nearly a year.

"A year is a long, long time when you know that your loved one has just two to five years to live," said Jerry Leight, 63, her husband and full-time caregiver. "She was totally dependent on someone else to get around."

But after the Ice Bucket Challenge, the Leights' equipment dilemma was solved. Within a month, a motorized scooter was delivered to their front doorstep. Leight can now drive herself to the store, get her nails done at a nearby salon, and go on long drives around her neighborhood. When one of her six grandchildren has a soccer or baseball game, she can scoot up to the edge of the field without anyone's assistance.

For Steve Lufkin, 50, the Ice Bucket bonanza hit at just the right time. The campaign went viral a few months after he was diagnosed with ALS, and Lufkin, a former math teacher at Henry Sibley High School in Mendota Heights, was deluged with offerings of support. Friends, relatives and students appeared at his home in Rosemount with checks in hand and offers to do the challenge. Many filmed themselves dumping buckets of ice on Lufkin's front lawn, and then posted the videos online, generating still more support.

"It really made me feel loved, at a time of not really knowing what the future held," Lufkin said.

"In no way, in our wildest dreams, was this something that we thought this many people would do," added his wife, Stacy.

This spring, Lufkin retired after 27 years as a teacher. Even with a special amplifier to project his weakening voice, he had become unable to handle the daily coursework. Still, he was able to keep working as a statistician for the Rosemount High School football team, with help from a motorized scooter bought with money from the Ice Bucket challenge. On Friday night home games, Lufkin still makes the mile-long trip from his home to the high school football field, weaving his way down neighborhood sidewalks.

"My body is breaking down, and that's the disease, but not my mind," Lufkin said. "It's hugely important to be able to continue doing the things that are important in my life."

Chris Serres • 612-673-4308

TWitter: @chrisserres