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Jamie Heywood is a live wire of a man, a thin, energetic mechanical engineer who entered the biotech world after his brother was diagnosed with amyotrophic lateral sclerosis in 1998. Seeing the state of basic science around the disease, he started the world’s first nonprofit biotechnology company, ALS TDI, with his family. From that moment, he was never one to mince words.

So he made his frustration clear when he spoke for the first time publicly about what has been happening to his second company, PatientsLikeMe, which is being forced by a shadowy U.S. regulatory body to unwind an investment by China-based iCarbonX. At the conference where Heywood appeared recently, the Convergence Forum on Cape Cod, the room took on the tenor of a wake as he spoke about the government order.


“The financial side is going to be devastating both for us and iCarbonX, but I think I’m going to be able to continue the program,” Heywood said. “What I struggle with is … if we can’t collaborate to improve human health with people who have done so credibly and well, well, I don’t know what we’re going to do as a world.”

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  • I think there is great value in PatientsLikeMe. I have shared some of my experiences here:

    I don’t know how much it helps, but I kind of wondered why PatientsLikeMe was a for-profit company. Maybe there need to be some more broader discussions (and other people can provide more specific advice than I can). However, if conversion to a non-profit was possible/helpful, I think that could be an interesting conversation.

  • I fully agree with Michael Gilman’s crystal-clear vision of the US carving out its own demise as Biggest Looser. “Homeland Security” is the ultimate paranoidal scapegoat for US policy makers, exercised in stiffling, fear-mongering, brutal slashing of progress. WHEN does that nation realize that collaboration beats exclusion ?????
    It seems that Committee of Full-blown Idiots is more appropriate for CFIUS.

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