Last summer, neurology professor John Landers was stuck. His grant proposal for funding to sequence the genomes of patients with amyotrophic lateral sclerosis, or Lou Gehrig’s disease, as part of a worldwide project to better understand the illness, had been rejected. The ALS Association, a nonprofit that supports research, didn’t have the funds.
Then about 3 million people dumped buckets of ice water over their heads—and everything changed.
“We had a grant in with them asking for about $1 million, and although they were very excited about the project, it was beyond what they were able to do,” Landers said in an interview from his lab at University of Massachusetts Medical School. “However, luckily the Ice Bucket Challenge kicked in and as a result of that, they were able to fund this.”
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The Ice Bucket Challenge—a viral sensation that involved daring friends to dump ice on themselves or donate money to ALS research—raised $115 million for the ALS Association last summer (many people both dumped and donated). That compares with its total annual budget, including regional chapters, of $60 million. It’s also spurred international awareness about a crippling neurodegenerative disease with no good treatments, and which is often fatal within two to five years of diagnosis.
ALS afflicts about 30,000 people at any given time in the U.S., and about 5,600 people are diagnosed with it each year. But its causes aren’t well understood, making research like Landers’—called Project MinE—crucial.
“To the extent that we can understand what’s going on on the genetic side, those are things we can target through drug development,” Landers said. “The best way to think about this is: You bring your car into the garage and it’s just not working right; until you figure out what’s going wrong with the car, you can’t fix it.”