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  • FARA’s 2018 Financial Report Online

    Posted by Matt Lafleur on July 1, 2019 at 7:45 am

    FARA released an online version of its annual report for 2018. That year marks 20 years of existence for FARA.

    This report details all of the progress it’s made in researching FA. It seems hard not to be hopeful that, thanks mostly to FARA’s efforts, a treatment or cure for FA may not be too distant.

    Check out the link. What are your thoughts?


    Jonathan replied 5 years ago 2 Members · 3 Replies
  • 3 Replies
  • Jonathan

    July 1, 2019 at 11:46 am

    My thoughts are…not positive. I think like most NPOs working to raise funds to solve a certain problem, they began with a noble cause. But the medical science to solve genetic issues isn’t here. It never will be.

    But, hey, they keep hope alive for many patients and families. Some of the funds they raise pay scientists to keep on science-ing. And some of those funds keep a few FARA folks employed.

    Is it worth it? I used to think so.

    • Matt Lafleur

      July 1, 2019 at 11:49 am

      Thanks for being so honest in your reply. When you say “I used to think so,” what was the turning point that made you change your outlook?

      • Jonathan

        July 1, 2019 at 1:01 pm

        As I gradually became more familiar with the science of FA and medicine, as well as, the economics of NPOs and medical research…I decided to stop. A lot of it is a game or trick. If I get proven wrong, then great. I really wouldn’t mind. But there’s a helluva lot more to life. FA isn’t really a priority for me.

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