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A father’s mission: How one man developed a drug to save the lives of his children

Father, #RareDisease Cure-Hunter |  #SNRTG #BigData #science #pharma #biotech #DNA

  • By the year 2000, with the help of a scientist friend, John started a small biotech company in the hopes of finding a cure for Pompe disease.
  • With no treatment for the disease available, doctors told the Crowleys that their children would get very sick and become very weak.
  • Pompe disease is a rare genetic neuromuscular disorder that causes progressive muscle weakness in people of all ages, according the Pompe.com.
  • A few months later we had Patrick tested, and learned that he did have Pompe disease as well.”
  • “We didn’t know that we could change the course of their disease, but we wanted to never have any regrets that we didn’t try to do everything we could,” Crowley said. “

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@Primary_Immune1: “Father, #RareDisease Cure-Hunter | #SNRTG #BigData #science #pharma #biotech #DNA”


In 1996, John Crowley’s two youngest children received what doctors at the time believed to be a death sentence.


A father’s mission: How one man developed a drug to save the lives of his children

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