At the time, it may have just seemed like a fun thing all of the kids in the neighborhood were doing to stay cool during the summer or a weird bit that people were adding to their wedding receptions and graduation photos. Despite the kitschy viral madness that was the “Ice Bucket Challenge” way back in 2014, the funds that the challenge raised have now been directly linked to a major breakthrough in ALS research. If you recall, for every video or picture people posted of either themselves or their family doing the challenge, they were also meant to donate any amount of money to the ALS Association.
The ALS Association then donated $1 million of the total amount raised to the UMass Medical School’s Project MinE, which has now discovered a gene that could offer treatments or further clues about how to target a currently untreatable and incurable disease that is newly diagnosed in about 5,000 people every year in the United States alone.
When I met Pete Frates, the originator of the Ice Bucket Challenge, a few years back he was in good spirits (and had just watched a bunch of people jump in the frigid Massachusetts ocean in December) and excited about the possibility of a breakthrough. The entire Frates family insisted then that they would never stop searching for new ways to fundraise in pursuit of a cure and hopefully support a breakthrough one day. While this might not mean a cure in the short term, it is a far faster leap in the scientific knowledge of the disease than many people could have hoped.
Although Frates’ condition continues to deteriorate over the years, as ALS does for everyone who is afflicted, he remains in those great spirits and in search of a cure. Maybe this genetic discovery is truly the first step in a new path to effective ALS treatments and a cure.
All my peeps, thx for da love. im doin fine. med weed and netflix.
oh ya, for the worrywarts out there, never forget how effn tuff i am.— Pete Frates (@PeteFrates3) July 25, 2016
(via The New York Daily News)
