Web Video: How a viral fundraiser earned a cool $220 million for ALS

Dec. 30, 2014 AT 11:37 a.m. EST

This year, a challenge to Facebook users to douse themselves in ice water became an internet craze, raising millions for ALS, or Lou Gehrig’s disease. Gwen Ifill talks to Nancy Frates, the mother of the man who inspired the ALS Ice Bucket Challenge, about the impetus for the viral fundraising campaign and how it has advanced awareness and research of the disease.

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Notice: Transcripts are machine and human generated and lightly edited for accuracy. They may contain errors.

GWEN IFILL: Tonight, as we approach the end of the year and the deadline for last-minute tax-deductible charitable giving, we look at philanthropy at the click of a keyboard.

We start with a look at the viral campaign that changed the online game last summer, the ice bucket challenge.

It was the Internet craze of the summer, people around the globe dousing themselves in ice-cold water to raise money and awareness for ALS, or Lou Gehrig’s disease, from NBA star LeBron James, to former President George W. Bush, and even cartoon character Homer Simpson.

ACTOR: Hoo! Hoo, boy! Oh, that was cold.

GWEN IFILL: All told, the effort raised $220 million for ALS research. The association thanked donors in September.

No one could have predicted this amount of attention for ALS, but we’re incredibly grateful to everyone who was willing to stand up to a disease that steals your ability to walk, talk, and even breathe before it takes your life.

GWEN IFILL: But the challenge also generated criticism, that it was too much a gimmick, taking attention away from other worthy causes.

The idea for the campaign was widely credited to the family and friends of Pete Frates, a former Boston College baseball player. He was diagnosed with ALS in 2012. And, just yesterday, he celebrated his 30th birthday at a New England Patriots game.

Pete’s mother, Nancy Frates, helps run the family’s Team Frate Train fund, which covers some costs of Pete’s care. She also serves on the board of the ALS Association. She joins me now to talk about the lasting impact of this year’s ice bucket windfall.

Nancy Frates, thank you for joining us.

We’re talking about $220 million worldwide. Is that what you expected?

NANCY FRATES, Team Frate Train: Oh, I don’t know if we set any expectation when this started.

When we started in July when it came to Boston, initially, it was to raise awareness. And raising awareness was a mission that my son set two-and-a-half years ago, the day he was diagnosed. We as a family looked at the situation of ALS. It was discovered about 140 years ago.

Lou Gehrig was 75 years ago. And when the doctors told us that our 27-year-old son had ALS, we kind of went to our knowledge Rolodex. What did we know about ALS at that moment? And all I knew was that it was bad, and that Lou Gehrig was 75 years ago.

And the second question was, what is the treatment? And, unfortunately, there is no treatment and there is no cure. I’m not exactly sure what was more devastating, the actual diagnosis or to find that there was nothing that was being done right now.

GWEN IFILL: Well, you know, full disclosure, full disclosure here, Judy Woodruff and I both took that challenge at one point this summer. And I’m still — still cold thinking about it.


GWEN IFILL: What was more valuable in the end after this whole exercise? Was it the money that was raised or was it the awareness?

NANCY FRATES: Oh, I think both. I think one — they’re hand in hand with each other.

We knew, if we raised awareness, that the funding would follow, because our family looked at it as an unacceptable situation, that the disease had been in the shadows. And we knew we needed to get the reality of what the disease actually does to a patient and to the family and community around it.

And once people realized that there was no treatment at all for this disease right now and what it actually does to a patient with a three-to-five year prognosis, that they would feel the same way we felt, that it would be unacceptable.

So, awareness, we knew it would lead to funding. And continued momentum in the awareness will — we believe, will continue the funding coming in, until we find the treatment and cure.

GWEN IFILL: Well, where did the money go? How do you measure the success of this, other than money in the bank?

NANCY FRATES: Well, it’s — we’re already putting the money to work. The ALS association in the United States, in October, we released $22 million, $10 million and a $5 million grant.

Both of those funded projects that had matching funds. The $10 million had a $10 million matching fund from the ALS Finding a Cure Foundation, and $2.5 million grant from the Tow Foundation.

All of that, $18 million of the $22 million went directly to research projects that are being used in discovery and development of therapies that we can quickly get to pharmaceutical companies and to clinical trials.

GWEN IFILL: Nancy Frates…

NANCY FRATES: The other $4 million…

GWEN IFILL: I’m sorry. Pardon me.

I just wanted to ask you, what do you say to other worthy causes, other charity who feel like they could use a little boost, who feel like maybe they got distracted by this bucket challenge, that the viral nature of it took money out of their coffers?

NANCY FRATES: And from my discussions with other people involved in other charities, that quite didn’t happen.

August traditionally in nonprofits is a very slow month. And the fact that the ice bucket challenge happened in a month where nonprofits really don’t count on any money coming in, other diseases — and I’m sorry I don’t have any facts and figures to actually back this up — but I have been told that other nonprofits saw a rise in their coffers during that month.

The other piece is that the ALS Association reports that 50 percent of the donations that were received during this campaign were from 18-to-30-year-olds. That’s good news for everybody in the nonprofit world. That means that this generation has dipped their toes into philanthropy.

And as they grow and as their income grows, that is good for all nonprofits.

GWEN IFILL: Was this a lightning strike or is this something that can be duplicated?

NANCY FRATES: I’m not sure if we want to duplicate it or if we just want to enhance it, grow it.

We want to keep the educational arc going. As far as we’re concerned, awareness will continue to keep the money coming in. And we know that there are a lot of very smart people working on this disease. They just needed to have the light shone on it and to have the money start coming in.

We’re talking about game-changing money that the ice bucket challenge gave to the ALS community at large. So I have talked to the top doctors and the top researchers. And all of them have said this is the tipping point in the trajectory of the disease.

GWEN IFILL: All right.

Nancy Frates, mother of Pete and member of the ALS Association board, thank you very much.

NANCY FRATES: Well, thank you for having me.


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