Five summers ago, videos of people dumping icy water over their heads deluged Facebook and Twitter. It was called the ALS Ice Bucket Challenge. In addition to soaking themselves, participants donated money to organizations seeking a cure for ALS or Lou Gehrig’s disease. Then they asked three friends, family members or co-workers to do the same.
In just six weeks in 2014, the Ice Bucket Challenge, or IBC, raised $220 million worldwide. Of that amount, $115 million went to the national ALS Association, increasing its annual budget, which had been about $20 million, by 575 percent.
“The Ice Bucket Challenge was a social media phenomenon,” says Mary Wilson Wheelock, executive director of the ALS Association’s Northern Ohio Chapter. “We tried to replicate it with our own campaigns, but we couldn’t do it. It was totally a grassroots effort by ALS patients, families and friends.”
This year, the ALS Association and its chapters are releasing impact reports showing how the $115 million raised through IBC has been spent. Wheelock says $89 million was appropriated toward research, while the rest was used for patient care and advocacy.
During the past five years, IBC funds have helped to:
Develop a new medication. Radicava, introduced to the market in May 2017, slows ALS progression by 33 percent. That may not seem like much, considering that life expectancy for ALS patients after diagnosis is two to five years, but the extra time provides hope as research for even better treatments continues.
“Our goal is to slow down the progression of the disease so it’s a chronic illness instead of a terminal one,” Wheelock says.
Normally it takes about 15 years for a new medication to advance from the idea stage to pharmacy shelves. But the ALS Association and ALS families helped speed the process by working with the U.S. Food and Drug Administration. Radicava was the first new ALS drug approved in more than 20 years.
Identify ALS-related genes. Before 2014, scientists had identified more than 30 genes linked to ALS. After IBC, another five ALS-related genes were discovered. “This is the highest rate of gene discovery in ALS history,” Wheelock says. “This is important, as every new gene discovery represents a new therapeutic target.”
Wheelock says 10 to 15 percent of ALS patients contract the disease because they inherit mutated genes. If scientists can determine the cause of the mutations, they can find a cure.
Improve patient services. With the $2 million it received in IBC money, the association’s Northern Ohio Chapter established the ALS Care Grants program. It gives ALS patients up to $500 every three months for out-of-pocket medical expenses.
“The biggest use of that grant is in-home care, because it’s not unusual to have a single caregiver providing care 24 hours a day,” Wheelock says.
Also, the Northern Ohio Chapter expanded its Founders Respite Program, which reimburses ALS families for up to eight hours a month of in-home care. And the chapter, which covers 33 counties, has increased its staff from two to four workers and plans to add a fifth staffer next year.
To learn more about how IBC money has been appropriated, and for information about the Northern Ohio Chapter’s annual Strike Out! ALS Gala & Auction on
May 18, visit alsaohio.org.