ALS Ice Bucket Challenge Donations Lead to Significant Gene Discovery

I&#x27;ve been wondering for some time what the next step is for gene sequencing. Shouldn&#x27;t someone be working on a 50 year long study where people are brought in at age 20, genes sequenced and dna stored, and an extremely thorough battery of parameters (height, length of each long bone, eye color, etc.) is measured. Tie everything in with medical history. Do the same thing every 10 years for each subject until death.<p>With a large enough sample pool, we&#x27;d be able to correlate features with obscure genes, wouldn&#x27;t we? Am I missing something fundamental?<p>It seems like now is the time to get started.

I know we love to rain on social networks as lacking for one reason or another. But taken together I think they&#x27;re a large part of the success of the fundraising here. Have we seen other global social benefits from social networks?

Being able to get a follow up on those donations will help a lot driving donations in the future. Being able to get a followup and really know what your money is used for, and get confirmed that your money has actually contributed to something significant is incredibly valuable and not enough organizations do it.<p>That&#x27;s what helped a lot charity:water, which not only promised to use 100% of the fund to build actual wells in africa, it would tell you exactly which well would get built with your money, where, and then send you a picture of the well.<p>That&#x27;s great to see that the whole ice bucket challenge actually helped the cause.

Constructing a narrative around the usage of donations has been something scientific&#x2F;medical charities have struggled with in comparison with foreign aid charities like World Vision. This article is a smart move for them.

I remain skeptical. Tax records show the Ice Bucket Challenge was extremely profitable to organizers of the non-profit, so there is significant incentive to keep the PR machine going.

To anyone suffering from this condition, or that know someone with it, watch this video, doesn&#x27;t hurt. It saved my life. <a href="https:&#x2F;&#x2F;www.youtube.com&#x2F;watch?v=UY9FdULDV6M" rel="nofollow">https:&#x2F;&#x2F;www.youtube.com&#x2F;watch?v=UY9FdULDV6M</a>

Interesting that the gene &quot;discovery&quot; is really just making an association. The gene itself was discovered a long time ago (<a href="https:&#x2F;&#x2F;www.ncbi.nlm.nih.gov&#x2F;pmc&#x2F;articles&#x2F;PMC556810&#x2F;" rel="nofollow">https:&#x2F;&#x2F;www.ncbi.nlm.nih.gov&#x2F;pmc&#x2F;articles&#x2F;PMC556810&#x2F;</a>), and associated with other negative outcomes.<p>Like many that are involved in diseases, the gene appears to be activated in response to DNA damage.

I wish I didn&#x27;t have to say this, but: Statistical significance != Success<p>We will have to wait a decade to find out if this was actually a significant development that should be counted as a success.

Let&#x27;s say this discovery leads to a drug&#x2F;treatment for the disease. What happens to it? Does a company get to patent it and then sell it back to the people who paid for the research (with donations)? Does it become public domain? This ambiguity has prevented me from donating to similar causes in the past.

<i>Understanding NEK1’s role in disease will provide an important new target for therapy development.</i><p>I hope that means they will use it to try to map the pathology of the condition and not just develop gene specific drugs.<p>I do not know why this is being downvoted, but developing expensive drugs without really making progress on understanding the pathology is something they have done with other disorders. Money before patient care. And it is a sucky practice.

someone disagrees: <a href="https:&#x2F;&#x2F;boingboing.net&#x2F;2016&#x2F;07&#x2F;28&#x2F;the-ice-bucket-challenge-did-n.html" rel="nofollow">https:&#x2F;&#x2F;boingboing.net&#x2F;2016&#x2F;07&#x2F;28&#x2F;the-ice-bucket-challenge-d...</a>

Should the funding of critical discoveries such as this be left to the success of a social media campaign, which may or may not succeed?

I saw &quot;alsa.org&quot; on a HN post, and expected this to have something to do with sound cards.

23andme has not yielded a single significant correlation so far. What makes this particular correlation <i>significant</i>? .