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How will ALS Ice Bucket Challenge money be spent?

August 22, 2014 at 6:46 PM EDT
From George W. Bush to Kermit the Frog, scores of celebrities and thousands of others have posted videos of ice water being dumped over their heads. It’s all to raise money to battle ALS, a disease that destroys nerve cells in the brain and spinal cord, for which there is no cure. For a look at the charity at its center, Judy Woodruff talks to Barbara Newhouse, president and CEO of the ALS Association.
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TRANSCRIPT

JUDY WOODRUFF: Finally tonight, a fund-raising and Internet phenomenon that is sweeping the country, the ALS ice bucket challenge.

We start with a little background.

STEVEN SPIELBERG: I’m Steven Spielberg, and I’m accepting the ice bucket challenge.

JUDY WOODRUFF: From award-winning movie directors, to LeBron James and other all-star athletes.

LEBRON JAMES: ALS challenge.

JUDY WOODRUFF: From former President George W. Bush and wife, Laura.

FMR. PRESIDENT GEORGE W. BUSH: To you all who challenged me, I do not think it’s presidential for me to be splashed with ice water, so I’m simply going to write you a check.

FMR. FIRST LADY LAURA BUSH: That check is from me. I don’t want to ruin my hairstyle.

JUDY WOODRUFF: To even Kermit the Frog.

ACTOR: Three, two, one.

JUDY WOODRUFF: Scores of celebrities and thousands of others have posted videos of ice water being dumped over their heads.

It’s all to raise money to battle ALS, a disease that destroys nerve cells in the brain and spinal cord and generally proves fatal within three to five years. There is no cure. Credit for the idea goes to 29-year-old Pete Frates, a former star athlete at Boston College who was diagnosed with ALS in 2012.

But not everyone approves. Officials in drought-stricken California are urging people to use good judgment on whether it’s a wise use of water. And one mass challenge event turned tragic yesterday. Two firefighters in Campbellsville, Kentucky, had just sprayed water on a college band when their ladder got too close to a high-voltage power line. The two were badly burned, with one in critical condition.

Still, the social media craze has raised more than $53 million for the ALS Association since the end of July. That’s up from $2 million in the same period last year.

For a look at the challenge and the charity at its center, I’m joined by Barbara Newhouse. She’s president and CEO of the ALS Association.

Welcome to the NewsHour.

BARBARA NEWHOUSE, President and CEO, ALS Association: Thank you, Judy.

JUDY WOODRUFF: So, did you — this has taken off like a storm. Did you have any idea when Pete Frates and his family issued this challenge that it was going to lead to this?

BARBARA NEWHOUSE: No. No, there’s no way that — I don’t think anybody could have predicted what happened with this. It’s a new age with social networking.

JUDY WOODRUFF: What do you think has made the difference?  How do you explain it?

BARBARA NEWHOUSE: You know, I believe with all my heart that what makes the difference is, this started so organically, because it started with families and people with ALS, and it took off from there.

I don’t think that you could come in and bring your development staff and your marketing staff and come up with something that is going to do what this did. It had to come from the heart and the families.

JUDY WOODRUFF: And so how much has your association been pushing it since it started, or has it all been out there?

BARBARA NEWHOUSE: Well, it’s all been out there.

We did one e-mail to — and that was very early on. So, like, back on August 6, we did one e-mail.

JUDY WOODRUFF: Just a few days ago.

BARBARA NEWHOUSE: Yes. Well, it seems like it.

One e-mail on August 6 to 60,000 people, and that was it, and we have had to do nothing since then. It has just had a life of its own.

JUDY WOODRUFF: And as we have been — as you and I were just discussing, it’s now raised over $53 million.

BARBARA NEWHOUSE: Yes.

JUDY WOODRUFF: What will this money go toward?  How will it make a difference in the lives of people with ALS?

BARBARA NEWHOUSE: First of all, the mission of the ALS Association is three-pronged. So, research is a part of our mission. Care service is a part of our mission for quality of life while people are living with ALS, and then advocacy.

So this money is going to make a big difference. We will be doing a lot on the research front, but we will also be recognizing that we have got people who have needs every day, and we will be looking to meet those, too, working through our 38 chapters across the country.

JUDY WOODRUFF: So, prevention, the research that would lead down the line, down the road potentially to prevention, a cure, is part of it, but you’re saying also to treat those who have ALS and will have it…

BARBARA NEWHOUSE: Right.

BARBARA NEWHOUSE: Right now, we have — we don’t have any good treatments, really, and we certainly don’t have a cure.

So we do want to make sure that we are being very thoughtful about how these dollars are spent on the research front as well, because whatever we do in research, care services, and even advocacy has to be sustainable, has to be sustainable. And so we need to be very thoughtful about that.

JUDY WOODRUFF: So when you say you need money for treatment, that there’s no good treatment right now, what would treatment consist of?

BARBARA NEWHOUSE: Well, we’re looking — part of our research is around drug therapies, to see what kinds of drugs would be helpful to an individual with ALS.

So those are the kinds of treatments we’re talking about.

JUDY WOODRUFF: Is there relief at this point for someone who is diagnosed with ALS?

BARBARA NEWHOUSE: Throughout the country, we have ALS-certified clinics.

And those are partnered with large research institutions, also large — very large hospitals. And individuals with ALS can come in. And they have what I would call an integrated approach to their health care, including not only meeting with a neurologist, but a P.T., O.T., nutritionist, social worker.

JUDY WOODRUFF: So some of this money will of course go to improving all that.

BARBARA NEWHOUSE: Yes.

JUDY WOODRUFF: Well, it’s been a firestorm, but a firestorm in a good way.

BARBARA NEWHOUSE: Absolutely.

JUDY WOODRUFF: Barbara Newhouse, president of the ALS Association, we thank you.

BARBARA NEWHOUSE: Thank you.

JUDY WOODRUFF: And congratulations on what’s happened.

BARBARA NEWHOUSE: Thank you. Thank you.

JUDY WOODRUFF: And one note before we leave the subject.

Earlier today, Gwen and I had our own encounter with the ice bucket challenge. Here’s a look.

GWEN IFILL: And here to join us are some other members of our PBS family who are really only too happy to do this, our staff.

Hats off.

JUDY WOODRUFF: Hats off.

Here we go.

(SCREAMING)

(LAUGHTER)

JUDY WOODRUFF: It was cold. But it was, as you heard, for a good cause.

You can see the complete video of that dousing. It’s on our Web site PBS.org/NewsHour.

And I have to say, our staff also posted it in slow-motion because they enjoyed watching our reaction so much.