One of a Kind (2014)

I’m grateful to whoever posted this. Unfortunately it appears that Bertrand passed away in 2020 from septic shock, but he was able to develop much better after his diagnosis. There’s more information at https://bertrand.might.net/ for anyone curious.

> It helps that both the Mights and the Wilseys have family money. (Matt Might’s father is the president and C.E.O. of Cable One, the cable-television division of the former Washington Post Company.) Since 2012, the Mights have devoted more than a hundred thousand dollars a year to NGLY1-related research in Hudson Freeze’s lab, while the Wilseys have spent two million dollars funding researchers around the world.

My knee-jerk cold-hearted reaction to this was that, while it's great that the parents of the children with the rare disease were able to get some answers about their children's condition, this sounds like a vanity project for some very rich people. Which other secrets of the human genome might we have unlocked if the money hadn't incentivized these specialists to spend time investigating down this one alleyway? Like, there's a limited amount of people in the world who study biology at this level and incentivizing them to do research in one area necessarily means that another area will be sacrificed while they do the work.

Then I self corrected. There's not a limit of people interested in researching things like this. There's a limit of funding. Any additional funding towards researching genetic diseases allows more specialists to enter the field.

Oh, wow, this is the son of Matt Might from The Illustrated Guide to a Ph.D…! What a story.

https://matt.might.net/articles/phd-school-in-pictures/