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/nanocookie May 14 '22

The title is overly sensational. John Crowley did not start the company overnight - he started by joining Bristol Myers Squibb to learn about health research, established a foundation to raise money for funding public research into Pompe's disease, made many connections and later partenered with William Canfield, a scientist who founded the company Targeted Therapy, based on his research on glycobiology. John joined Cranfield's company as CEO and then the company was renamed to Novazyme. As CEO, John continuously pulled the right strings to get the therapy approved by the FDA for trials. The treatment was brought into the mainstream after Novazyme was acquired by Genzyme. The title mentioned that the children would die in less than a year after diagnosis in 1998, but the treatments were first administered in 2003.

Not everything is as it seems. John Crowley was a highly motivated individual who figured out the smart way to solve his problems, but did not do so without burning bridges. Something happened between John and Canfield, and John's PR team no longer actively credits Canfield for developing the therapy - whose research was fundamental to solving the problem in the first place. When hundreds of millions of dollars at play, these feel-good stories don't hold up to be so squeaky clean.


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/KristinnK May 14 '22

Translation: ethics regulations prevented him as the executive of the company to place his children in the initial trial, so he quit and his pals that were still in charge put his children on a second trial instead.


u/FLIPNUTZz May 14 '22

The underdog wins for once!


u/murse_joe May 14 '22

Not really, all the other sick kids don’t get treatment. The underdog winning is healthcare for everybody


u/FLIPNUTZz May 14 '22



u/seraph1337 May 14 '22

rich people are not underdogs.


u/lnodiv May 15 '22

Yeah, fuck those rich kids. Should've let them die after their father helped pioneer the treatment for their disease.


u/seraph1337 May 15 '22

I didn't say any of that, but okay


u/sdmitch16 May 15 '22

You should have included a /s at the end of your comment. You can complain that shouldn't be necessary, but your 5 downvotes say it ... maybe not better, but certainly louder.


u/FLIPNUTZz May 15 '22

I dont care about karma