On the same day in August that he and three other Johns Hopkins University researchers published in Science their breakthrough explanation of sources of ALS (also known as Lou Gehrig’s Disease), Jonathan Ling did a Q&A session on Reddit. He said he wanted to set the record straight on whether the ALS Ice Bucket Challenge actually accomplished anything. The fundraising craze sponsored by the ALS Association raised $115 million for disease research in just six weeks in 2014 when it went viral on the Internet. It continued to raise tens of millions more in repeat donations that followed, and the ALS Association tripled its annual budget for research.
Ling recounted “reading a lot of stories about people complaining that the Ice Bucket Challenge was a waste and that scientists weren’t using the money to do research, etc. I assure you that this is absolutely false.” The surge of research money from the ALS Association allowed his Johns Hopkins team to conduct high-risk, high-reward experiments that were crucial to their discovery, he reported.
Researchers hope this new understanding could translate into lifesaving therapies. And thanks to more than $200 million of Ice Bucket cash, the expensive clinical trials needed to test applications were already paid for in advance. This unusual arrangement will speed results.
Meanwhile, a different academic team centered at the University of Massachusetts Medical School made a separate breakthrough on ALS. By carrying out the largest-ever study of families of ALS patients, they discovered that a gene variation is one of the top causes of the disease. This important finding was “really made possible by the ALS Ice Bucket Challenge donations” that funded the special investigation, according to principle scientist John Landers.
At any given time, about 30,000 people suffer from ALS—which kills most of its victims within a couple years of diagnosis. There is currently just one drug for treating the disease, and it quickly loses its effectiveness, extending a patient’s life only three to six months.
- Jonathan Ling on Reddit, reddit.com/r/science/comments/3g4c7v/science_ama_series_hi_im_jonathan_ling_a
- UMass Medical School release, umassmed.edu/news/news-archives/2016/07/new-gene-variants-present-in-3-percent-of-all-als-patients/