Last summer, as millions of people worldwide posted Facebook and YouTube videos of themselves taking part in the Ice Bucket Challenge in the name of raising funds and awareness for amyotrophic lateral sclerosis, or ALS, skeptics wondered if all that social media hype would translate into something tangible.
Short answer: Yes. The challenge raised $115 million for the ALS Association, which in October announced initial grants of almost $22 million to researchers, including Jonathan Glass, who directs the Emory ALS Center.
Glass is one of the U.S. investigators for Project MinE, an international genetic research program that will receive $1 million in funds raised by the challenge. Glass, the only local researcher involved with MinE, says he’d requested funds long before anyone posted ice bucket videos. “We had put a grant into [the ALS Association] back in May, before anybody had done the Ice Bucket Challenge,” he says. “It’s an enormous project that requires multiple countries, multiple investigators, and it’s going to be very, very expensive.”
Although Glass wasn’t surprised his program got the funding, he was shocked at the success of the slushy fundraiser itself. “What was wonderful was that it was grassroots. What it’s done is raise awareness for a disease that is relatively rare,” he says. “In terms of a campaign, it was just extraordinary. We have money; we have awareness.”
Of course, Glass and his team all performed the challenge. “Even my mother did it—and she’s 87 years old.”
Fast facts: Project MinE
- The project is working to map the DNA profiles of 15,000 people with ALS to compare with the profiles of 7,500 control subjects.
- 13% of the profiles—2,808 to be precise—had been collected by November 2014.
- The study’s objective is to identify genes that may influence whether someone gets ALS, when an individual gets it, how quickly it manifests, and how the disease affects the body.
- The project originated in the Netherlands and includes researchers in multiple countries, such as Portugal, Belgium, and Ireland. The name MinE comes from “mining”
- 2,500 (or 1,950 Euros) is the cost to complete one DNA sequence
This article originally appeared in our January 2015 issue.
