WIKIMEDIA, KIM QUINTANOWith hundreds of thousands of people dumping ice water over their heads and donating more than $100 million to the amyotrophic lateral sclerosis (ALS) organizations since mid-July, this summer has seen an unprecedented burst of ALS advocacy. To the patients and family members suffering from the paralyzing and eventually fatal neurodegenerative disease, the social media explosion that is the #IceBucketChallenge has offered a powerfully uplifting sense of support and accomplishment. To ALS researchers, the donations are perhaps equally uplifting—amounting to more than twice the National Institutes of Health’s recent annual budgets for the disease in less than two months.
“I really under-predicted where this would go,” said Jamie Heywood, cofounder and chairman of social networking site PatientsLikeMe and cofounder of the nonprofit research organization ALS TDI, which has received just over $3 million in donations during the last eight weeks as a result of the viral charity campaign. Heywood’s former advisor at MIT, mechanical engineer Woodie Flowers, dedicated his own elaborately engineered ice bucket challenge to the memory of Heywood’s brother Stephen, who battled ALS for eight years before passing away in 2006. “All the people that I have known [who] have died, their families have come back and connected over this,” said Heywood. “Who can not feel great about everyone in America thinking about the disease that killed your brother? . . . ...
