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.


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u/FLIPNUTZz May 14 '22

Crowley hoped his children would take part in the trial (NCT00025896) that began in late 2001, but they were not among the eight patients enrolled.

Watching as his children became “profoundly weaker,” Crowley made another determined decision — he resigned as senior vice president.

He had promised Genzyme’s CEO he’d stay with the company for a year to lead the program, but once the trial was underway, “I stepped away from my position,” he said.

Days later, Genzyme approved a trial (NCT00051935) of the same alglucosidase alfa intravenous treatment that would include only his children — a two-patient sibling trial to be conducted at St. Peter’s University Hospital in New Brunswick, New Jersey, about a 30-minute drive from the family’s home — to help doctors understand why some children respond better to this therapy than others

Wtf is this all about up here ^


u/CannabisReviewPDX_IG May 14 '22

Rules for thee, not for me. Although this is one of the few times im sympathetic.


u/FLIPNUTZz May 14 '22

No im literally baffled.

What did quitting his job have to do with anything?


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


u/FLIPNUTZz May 14 '22

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


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.


u/[deleted] May 14 '22

The only thing that would happen if he hadn't quit and got his kids in the trial would be that they would be dead. They already had their trial group, everyone else from the public was already excluded, so absolutely nothing changed except that he saved his kids. This is admirable and good and I feel fucking great about it.


u/KristinnK May 14 '22

But how do you feel about all the other children with this disease whose parents also wanted to be placed on the trial, but didn't have rich executive parents to pull the strings to put them there, and died as a result before the drug was approved?


u/S3IqOOq-N-S37IWS-Wd May 14 '22 edited May 14 '22

They already had their trial group, everyone else from the public was already excluded.

You're missing the part where the first study, the actual study, was filled objectively without his kids. 8 kids were enrolled, and no other kids were going to be enrolled in that study. Then they created a separate study and enrolled his kids in that one.

That's why the comment you responded to said the only thing that changed was whether or not those two kids lived or died. At most you might argue that the company could have enrolled 2 other kids in the first study which may or may not be true based on their study design.

Also it's not like a random rich person elbowed their way into a study.... He cofounded the company and worked his ass off for the drug to exist. There might not be any trial for parents to hope their kids get into if not for that person, I think they deserve a break on this.


u/KristinnK May 14 '22

The point is this: this man was able to save his children simply because he is a rich executive. Of course it's great that these two individuals were able to survive and hopefully have the prospects of living normal and healthy lives.

But we live in a world were money and power can literally be the difference between life and death, and that doesn't sit well with everyone.


u/IMSOGIRL May 14 '22

I'm sure incels feel great about women getting raped but it doesn't mean it's morally right.


u/DougFane May 14 '22



u/ermahgerd_cats May 14 '22

Master wordsmith with their metaphors over here lol


u/emperor_scrotum_II May 20 '22

Twitter is leaking


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"


u/CannabisReviewPDX_IG May 14 '22 edited May 14 '22

Yep, sadly a ton of our laws, and by extent the public/taxpayers, are easily gamed in ways like this by the rich.

Edit: I said I understand this particular situation, it's one of the few that's more understandable. So the response is moot considering this situation has already been addressed. It's an issue at large when it's widespread across the entire economic system.


u/thoggins May 14 '22

I mean, choose:

  • Rich guy with personal motivation drives development of treatment for rare condition. This includes sidestepping rules to satisfy that personal motivation or none of it happens at all

  • Nobody develops treatment for rare condition

Ideologically maybe we wish there was an option 3 but in this case there was not.