Lou Gehrig's Disease - Motor Neuron Disease - Amyotrophic Lateral Sclerosis
Thought it had been cured by now? Still no known cause. Still no cure. Still quickly fatal. Still outrageous.

Sunday, December 5, 2021

The Landscape Feels Littered

During the past week I have worked on finding the status of multiple ALS research projects.  You know, the ones that were hot topics ten or five or even just three years ago.  What ever happened to them?  What is going on with them today?

I find the grant information.  Then I find scant published results.  

The most troubling part is that it feels like projects morph from their original designs into something very different.  Maybe that drift is fine.  Maybe it's like converting an old shoe factory into a factory making cell phone cases.  But how do we know what is really going on in there?

How are we supposed to make sense of the entire landscape?  What happens to the project
infrastructures?  Are the lights even on in Building 7 in this figurative factory park?  

It feels akin to an industrial complex that was built helter-skelter.  New buildings are built to manufacture new things, but rather than having a cohesive architecture, we have dozens of individual plants with their own styles.  We have leaders who know how to do their work best in their own buildings.

Modern factories use colocation to leverage efforts among small manufacturers to minimize duplication of efforts  ALS researchers work in their own expensive silos.  And their promises of collaboration involve moving data back and forth, much like old factories used to move materials through arcane chutes and rail cars.

What is wrong with this picture?

So much is wrong.

And it is paid for by generous donors and taxpayers.  The litter of past research projects is as real as the litter of old factory buildings, and it is every bit as expensive.

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