The Ice Bucket Challenge rose to fame as a novel way to promote awareness of amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease. The person is filmed as he or she gets doused with a bucket of water and ice and then nominates at least three people to do the same within 24 hours.
The man behind the challenge, 32-year-old Pete Frates, is now struggling with the very condition he helped raised awareness for.
Frates is now back in the hospital and even fell prey to false reports that he is dead.
Man Behind ALS Challenge Back In The Hospital
Last Monday, July 3, the Boston native and former college baseball player, who was diagnosed with ALS five years earlier, released a video of himself on Twitter. He was lying in a hospital room, Pearl Jam’s song “Alive” playing in the background. Frates is paralyzed but is able to convey messages via eye-tracking technology.
His family, on the other hand, wrote in a Monday post on Facebook that “doctors, medicine, prayers and love” continue to aid him back to better health.
ALS results in total paralysis and death usually after two to five years from diagnosis, the ALS Association noted. It is known to lead to muscle stiffness, twitching, and weakness, which in turn causes difficulty swallowing, speaking, and breathing.
At present, there is no cure or effective treatment for ALS.
Despite the Ice Bucket Challenge’s success as an international phenomenon, Frates struggled to keep up with his hospital bills, his family said back in May. His monthly bills for the 24-hour home health care could reach $95,000, putting considerable strain on the family.
“Any family would be broke because of this,” said his father, John, confessing that it had reached the point where care had become unsustainable for them.
The challenge went viral as early as July and August 2014, using social media as its main platform. There were over 17 million people who posted their videos online, including Bill Gates and former U.S. president George W. Bush.
It raised over $115 million for the ALS Association, 67 percent of which were assigned to research and another 20 percent allotted for patient and community services, according to the group.
The funding helped researchers at Johns Hopkins University prove the role of the TDP-43 protein in the disease’s development. In 2016, the ALS Association reported another milestone, where University of Massachusetts scientists identified a gene responsible for ALS.
In May, the U.S. Food and Drug Administration (FDA) approved Radicava or edaravone, the first new ALS treatment in over two decades.