The Ice Bucket Challenge did not fund a breakthrough in ALS treatment

Originally published at:


So it did fund the research, and it did advance the research, but what the research found is not the silver bullet being reported.

I’m still okay with that. My expectations, as I’ve said elsewhere, for what the Ice Bucket Challenge would accomplish was “absolutely nothing.” Progress of any sort is a good thing.

Unless, of course, you’re right and this boost in private funding leads to a cut in public funding, in which case, yeah, that’s shitty.


So what you are saying is that Cory is out of his leagues and posting hyperbole that fits his narrow view of the world and is entirely inaccurate as he always is?

So this raised $125M which is a drop in the bucket for ‘science’. I’d LOVE for $125M to be dropped in a bucket for the disease that will eventually end my life. That fact is, there are thousands of diseases out there, and they all get a small portion of the billions spent on science research and anyone that actually works in the field understands this.


A spokesperson from The ALS Association Media Relations department was on a local radio station yesterday. She said the money from the ice bucket challenge has allowed them to shift focus more quickly to fund research showing promise and that the funds have been a great benefit. But yeah, let’s poo poo the cheerleading and tell people that their philanthropy doesn’t equate to adequate funding. That’ll be sure to help…


Actually, I think that he reported this pretty accurately. The headline is also accurate, but misleading — I’d’ve emphasized the word “breakthrough” to make it clear that that’s the part in doubt, not the funding or the discovery.


The breakthrough referenced is Project MinE, which was fully funded by $1 million of the over $115 million raised by the Ice Bucket Challenge. It used that money to identify gene NEK1, a gene newly associated with ALS. The ALS Association considers that gene among the most common genes associated with the disease.

So to be clear: yes, it was an important discovery. Yes, it did advance research. Yes, it gave ALS researchers an important, large new target to focus on. No, it’s not “vaporware”.


No, he is clearly out of his depth. But I’m not #disappointed because its been this way for a decade. It is a breakthrough…is it a breakthrough in the way average people that think hypothesis and theory means something completely different than anyone that has ever had a research methods class would use?

No. A breakthrough to the average person is OMG THEY CURED HIVCANCER AND THE COMMON COLD. To anyone in science, its a fucking breakthrough. It is a significant discovery.

And given the ‘recent’ breakthroughs with CRISPR and all that, it could end up moving towards something actionable.

Science doesn’t work the way people that claim to be science fiction writers but have sub-basic understanding of science does.


I’m happy it achieved something.
I thought once the challenge was over the money would go and we would never hear anything about it again.



FYI, source link was broken - I think you meant to point to which is just a link to

Whatever. My Boiling Water Challenge ™ is going raise a crap-ton of money.


YET… the people who actually made the discovery at UMass thanked the ALS Ice bucket people for their donation? Why do I have a feeling the author was one of those negative jerks who rather than admit they were a fool is trying to make cowardly excuses for himself?


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