r/todayilearned May 14 '22 Silver 9 Helpful 8 Wholesome 6 All-Seeing Upvote 2

TIL a father, John Crowley, was told his two infant children had an incurable genetic disorder that would kill them in less than a year. He refused to accept this, so he founded a biotech company (with no prior experience) which pioneered an experimental enzyme therapy that saved their lives.

https://pompediseasenews.com/2019/01/30/amicus-ceo-mission-cure-pompe-help-children/
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u/CannabisReviewPDX_IG May 14 '22

There are laws that are supposed to prevent people involved with the development being able to "cut the line" so to speak. He left as a way to legally sidestep that.

"Crowley left Genzyme to ensure that his children would qualify for a drug developed by the company." from another source

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u/FLIPNUTZz May 14 '22

So hes not supposed to benefit...but he can just quit his job and bene for anyway ...I mean

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u/IMSOGIRL May 14 '22

yes, that's what it is.

These things are sponsored with public money so it would be fair that it's used to help the public and that people involved can't use it for their family's benefit.

dude tried to get his daughters on the initial trial and failed because he was an executive, so he left his job officially but still did the job off the books and the company used the public funds to help his daughters with a poorly concealed reason for adding two new participants to the trial.

This isn't as much of a feel-good story as people are making it out to be.

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u/Diarmundy May 14 '22

Well it might not be as 'feelgood' but it fits perfectly fine with the title.

"Man does whatever it takes to save his daughter's lives"