5:20pm

Wed August 20, 2014
Health

The Momentum Of The Ice Bucket Challenge — And What It Means For ALS

Originally published on Wed August 20, 2014 8:30 pm

A recent fundraising challenge has gone viral on social media, calling attention to research into Lou Gehrig's disease. Audie Cornish talks with Forbes contributor Dan Diamond about the state of that research and where it goes from here after the fundraising success.

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Transcript

ROBERT SIEGEL, HOST:

This is ALL THINGS CONSIDERED from NPR News. I'm Robert Siegel.

AUDIE CORNISH, HOST:

And I'm Audie Cornish. Hashtag #alsicebucketchallenge - as of today, those words have helped raise more than $31 million for research of ALS or amyotrophic lateral sclerosis, otherwise known as Lou Gehrig's disease. This time last year, the ALS Association had barely raised $2 million. That enormous spike in donations is all thanks to people videotaping themselves pouring ice water over their heads. More than a million people have done it and that includes a lot of well-known names from LeBron James to President George W. Bush.

PRESIDENT GEORGE W. BUSH: I do not think it's presidential for me to be splashed with ice water.

CORNISH: If you're challenged, the idea is to complete your ice-water dump in 24 hours or donate $100. Of course, some people do both. Forbes contributor Dan Diamond has been tracking the momentum of the Ice Bucket Challenge and is looking into what it may mean for ALS research. Thanks for coming in to speak with us.

DAN DIAMOND: Thanks for having me.

CORNISH: So Dan, remind us exactly how this challenge came to be.

DIAMOND: So we are in the second big ice bucket challenge of the summer. The first was around breast cancer. It started in the pro-golfing community and with some college athletes. Peter Frates, an ALS patient up in Massachusetts, heard about the challenge, decided to co-opt it for his own important cause and challenged a number of his friends in the Boston area. So it took hold there and it quickly spread across the country and across pro-sports.

CORNISH: So if you raise, you know, as in this case, 17 times more than you normally do, where will all of those dollars go? I mean, what did you find out about that?

DIAMOND: That's the operative question for these groups right now. Some of those donations are going to go towards caring for people who have ALS right now. In terms of research, there are some questions over how can you best prioritize all of these new dollars.

CORNISH: So give us some context here. You write that ALS is considered a, quote unquote, "orphan disease." What does that mean? And what does that mean for the ability normally to get funding for research for it?

DIAMOND: ALS is not a lucrative market. There are not that many people who have the disease. Some estimates - according to the ALS Association, there are 30,000 Americans. The CDC says there are only 10,000. Either way, not very many people - ergo there's not a lot of reason for pharmaceutical companies to go after that kind of research. There have been a number of different clinical trials underway these past couple of years. We have known about ALS for 75 years. Lou Gehrig - his famous speech was 1939. There hasn't been a major breakthrough to treat ALS patients. There's one drug right now and it only helps with symptoms and prolongs lifespan by maybe a few months.

CORNISH: You know, for an organization like the ALS Association, how do you top this, right? How do you then come back to donors next year and ask, especially getting such a robust reaction?

DIAMOND: You know, I think that's a hard question. And maybe they won't top it. There is a sense though that ALS awareness is at a point that it hasn't been at in years, maybe in decades, maybe not since Lou Gehrig made his famous speech. On the ride over here I asked the cab driver have you heard of the Ice Bucket Challenge? And he said yeah. Had you heard of ALS before all these videos went around? He said he hadn't. And that, I think, is the big win for the Association. Yes, this is a once-in-a-lifetime social media craze. But when it's over, more people will know about ALS than before. And that could lead to gains down the road.

CORNISH: You know, it's one thing for people to have this kind of awareness of a disease, but do you get the sense people really understand what it is?

DIAMOND: It's a great question because watching a video of someone pouring ice on her head doesn't give you any special insight into what ALS does, which is essentially trap someone in a glass coffin. You can think, but you can't move. You can't speak. And that happens so rapidly over the course of a couple of years. So perhaps that's getting lost a bit. But in terms of getting awareness that there is this disease out there, I think the challenge has worked wonderfully.

CORNISH: Dan Diamond - he's a contributor at Forbes and news director at The Advisory Board Company. He spoke to us about the ALS Ice Bucket Challenge. Dan, thanks so much.

DIAMOND: Thank you, Audie. Transcript provided by NPR, Copyright NPR.

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