Biogen to study ALS, with help from ice-bucket pledges

Massachusetts Gov. Charlie Baker, right center, and Lt. Gov. Karyn Polito, third from left, participate in the Ice Bucket Challenge with its inspiration Pete Frates, seated in center, to raise money for ALS research, Monday, Aug. 10, 2015, at the Statehouse in Boston. (AP Photo/Charles Krupa)
Governor Charlie Baker leads a group taking the Ice Bucket Challenge at the State House in August.

Money raised through the famous Ice Bucket Challenge to fund research into ALS is going to use in Massachusetts.

The Cambridge drug company Biogen is putting up funds and partnering with the Columbia University Medical Center and the ALS Association to collect genetic data from 1,500 people with the nervous system disease. The early-stage research won’t directly lead to the creation of drugs to treat amyotrophic lateral sclerosis -- also called Lou Gehrig’s disease -- but it is meant to give pharmaceutical researchers a base to build on.

“This study will help in developing a detailed understanding of how different genes contribute to different clinical forms of ALS,” said Tim Harris, Biogen’s senior vice president of precision medicine, in a statement. “This kind of ‘precision medicine,’ in which a treatment is tailored to a person’s unique genetic make-up, is already being used in the cancer field. It is an approach we feel is ready for ALS, too.”


Dr. Matthew Harms, an assistant professor of neurology at Columbia University who will lead the effort, said in a news release that researchers would use the genetic profiles to try to spot warning signs of ALS in a person’s DNA. Those genetic risks will be shared with participants and other medical experts, who could use them to develop individualized treatment plans. The researchers will also save patients’ blood samples for future research.

The project will be funded by $3.5 million the ALS Association raised through its Ice Bucket Challenge campaigns, in addition to some amount of funds from a $30 million commitment Biogen announced earlier this year. The association said the Ice Bucket Challenge raised $220 million globally to fund its efforts in 2014, and kicked off what will become an annual fundraising effort at the beginning of the month.

Jack Newsham can be reached at Follow him on Twitter @TheNewsHam.