Peter Frates, ALS advocate, dies from disease

The founder of the viral ALS Ice Bucket Challenge is remembered after dying of the disease at 34.
4:10 | 12/10/19

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Transcript for Peter Frates, ALS advocate, dies from disease
Or a lot of viral challenges this decade as you know and one of the most memorable was no doubt the ice bucket challenge of 2014 remember that raising awareness for money for a LS. Or Lou Gehrig's disease and Peter for rates the man who started it all actors' own diagnosis. Has passed away and joined by Brian Frederick the executive vice president of the ALS association. Brian thanks for being with us today you know Peter was. No doubt an inspiration in he he made such a difference in ALS research you worked with him what was your fondest memory. Being with Peter. Well he was so kind so generous he always gave of himself he he really was really funny he was really funny guy he he shared a lot that would mean yacht instant message. Because that's how people they'll let's communicate. Primarily out once they've they've lost their ability to be kids it's the other arts theater technology and so. She was very kind and very funny and if my dog my favorite memory of him was. After she'd ever had been rumors of him I'm passing in a few years ago he had them checked into the hospital and media had falsely reported that he had. Died. He came out on social media and put together a video of him. What the song I'm alive from. Pearl Jam Bob singing along to that that was it's kind of a sense of humor about yeah. That's amazing you know this challenge you raise light I don't know half a billion dollars a what do you think. Was his impact not only on the research but the fund raising. Well I think he really inspired everybody around and everybody who met him and then obviously the ball unity when they'd so called on the ice suckered challenge it was because and his network. And all those people in Boston who embraced keep that it became. Our country ride for Obama aren't and that actually a global phenomenon soak. Your kids impact does that he helped to change. The trajectory of bailouts which was an unknown disease that's always a fatal disease. And now people know about it there's much more awareness and obviously it raised. About 220 million dollars around the world. To help put towards new treatments and our hope literature. Wait what is your response to critics who have said in the past that the money could have been spent in a better way. All of the money that was raised. Well we know dealers association that we've committed over ninety million dollars at the 115 million dollars race to research. Red we've also been able to provide about three times as much here around the country you people living with bail us. And then of course some of our efforts are to chart an advocate here in Washington for the federal government the paper. Research funding for Al Assad about. And CEO of the at age the DOT. So you know it it certainly the cost of getting in a new drug to market as about two billion dollars so. The 150 million dollars over strains we had to use very searching inquiry and trying to leverage that we could really maximize the tact. I have to ask ED think one gave there could be a cure for LS. Well I think actually read a whale us works there's going to be probably multiple years and I'm hopeful that there's multiple yours there's going to be different types of bailouts as we begin to understand it more. But I certainly think that we're right on the council but life extending treatment which would be huge because. Right now people would pay allies generally die within two to five years and I'm MP lived for seven years which roads amazing. But we really need to find some peanuts and enable people live work they'll last much longer lives. And I think we're right on the cusp of that. If we did to a chair or multiple cures that would be amazing but. I think I think PM ES soccer challenge actually really truly provided hope to the community and to the research community that rumor we're just about. Absolutely. I want to thank you Brian Frederick that executive vice president of the ALS. My association and we're sending love to Peter's family thank you so much for joining us. Extra premier S.

This transcript has been automatically generated and may not be 100% accurate.

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