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posted by cmn32480 on Wednesday July 27 2016, @08:32PM   Printer-friendly
from the those-challenges-actually-work? dept.

Believe it or not, but funding raised by the viral "Ice Bucket Challenge" has been credited for helping discover a gene that may cause some cases of amyotrophic lateral sclerosis (ALS):

The Ice Bucket Challenge that went viral in 2014 has funded an important scientific gene discovery in the progressive neurodegenerative disease ALS, the ALS Association says. Scientists have identified a new gene contributing to the disease, NEK1.

The Ice Bucket Challenge has raised $115m (£87.7m) from people pouring cold water over themselves and posting the video on social media. It was criticised as a stunt, but has funded six research projects. Research by Project MinE, published in Nature Genetics [DOI: 10.1038/ng.3626], is the largest-ever study of inherited ALS, also known as motor neurone disease (MND). More than 80 researchers in 11 countries searched for ALS risk genes in families affected by the disease. "The sophisticated gene analysis that led to this finding was only possible because of the large number of ALS samples available," Lucie Bruijn of the ALS Association says. The identification of gene NEK1 means scientists can now develop a gene therapy treating it. Although only 10% of ALS patients have the inherited form, researchers believe that genetics contribute to a much larger percentage of cases.


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  • (Score: 0) by Anonymous Coward on Wednesday July 27 2016, @08:41PM

    by Anonymous Coward on Wednesday July 27 2016, @08:41PM (#380881)

    Tell me it isn't so!

    I mean seriously, this is the reason publicity stunts were often done for volunteer or non-profit goals. While crowdfunding has made it easier, challenges, stunts, dunk tanks, etc have been doing this for charitable causes for decades, if not longer.

    Glad to see what started as a celebrity stunt doing something good for the world for a change though.

  • (Score: 2, Insightful) by Anonymous Coward on Wednesday July 27 2016, @09:34PM

    by Anonymous Coward on Wednesday July 27 2016, @09:34PM (#380901)

    How many people who helped fund the project will be able to access the paper? I hope the authors at least uploaded a pre-print somewhere.

    These pay-walled journals really need to die.

    • (Score: 0) by Anonymous Coward on Wednesday July 27 2016, @09:57PM

      by Anonymous Coward on Wednesday July 27 2016, @09:57PM (#380906)

      When one was contributing money, they weren't purchasing rights to the paper. You sound like those whiners who refuse to give to Pubic Television because "I'm not going to give them $50 if all I'm going to get from it is a coffee mug."

      You're missing the big picture here.

      • (Score: 2, Informative) by Anonymous Coward on Wednesday July 27 2016, @10:12PM

        by Anonymous Coward on Wednesday July 27 2016, @10:12PM (#380915)

        they weren't purchasing rights to the paper

        No shit. I was taking the opportunity to point out that the pay-walled journals are leeches that make their money by keeping knowledge away from people.

        This is nothing like whining about a donation gift because the pay-walled journals are not the ones doing the research. I was hoping the researchers uploaded a pre-print, which would not be closed access, to allow the people who helped fund the study actually be able to see the results.

    • (Score: 0) by Anonymous Coward on Wednesday July 27 2016, @11:45PM

      by Anonymous Coward on Wednesday July 27 2016, @11:45PM (#380943)
    • (Score: 0) by Anonymous Coward on Thursday July 28 2016, @01:18AM

      by Anonymous Coward on Thursday July 28 2016, @01:18AM (#380973)

      These pay-walled journals really need to die.

      I'll be planking until they do.

  • (Score: 0) by Anonymous Coward on Thursday July 28 2016, @02:58AM

    by Anonymous Coward on Thursday July 28 2016, @02:58AM (#381020)
    But well, he was supposed to have died in 1965, two years after he was diagnosed with ALS. 51 years later he's still alive, though not kicking, sadly.
  • (Score: 0) by Anonymous Coward on Thursday July 28 2016, @10:38AM

    by Anonymous Coward on Thursday July 28 2016, @10:38AM (#381125)

    More than 80 researchers in 11 countries searched for ALS risk genes in families affected by the disease

    Funny, how the establishment always finds cures to diseases that affect its own and never anyone else.

    For others, medicines are 'discovered' after walking through the Amazon jungle for years. And those medicines always cost a lot no matter what. No cures for you, goy!