Where Will the Funding from the ALS Ice Bucket Challenge Go?

The ALS Ice Bucket Challenge has taken social media by storm, raising over $90 million to date.  

Celebrities and sports stars, including Bill Gates, Mark Zuckerberg and LeBron James have all accepted the challenge, in order to raise awareness and donations for amyotrophic lateral sclerosis (ALS) research. 

The Challenge, sparked by ALS patient Pete Frates, caught on with Boston-area athletes and spread rapidly over the past few weeks.  Its success, whether due to narcissism, its goofy nature or its grassroots appeal, is inarguable.

Now comes the hard part: where will the dollars go and how will they change or advance ALS research?  “This amount of money…it opens up new opportunities that were previously unfathomable,” said Carrie Munk, the spokesperson for the ALS Association.

While it afflicts about 30,000 Americans (or about 2 in every 100,000 people), unfortunately, there’s little incentive for pharmaceutical companies to pour billions into R&D and pursue the market.  Currently, there is only one drug approved to treat ALS. 

The explosion of awareness of the disease comes as researchers are making breakthroughs in the lab.  Earlier this month, a research team published findings that suggest certain therapeutics could help lengthen the lifespan of ALS patients.  That follows other discoveries into pathways that affect the degeneration of crucial neurons.

“I know that many people are wondering what The ALS Association is going to do with these donations,” Barbara Newhouse, the association’s CEO and president said over the weekend. “My answer is this: invest prudently in helping people with ALS and their families and caregivers in the battle against the disease, while resolutely pursuing all avenues to extend, improve and ultimately save lives.”

To read the entire article, please visit www.forbes.com.