Friedreich’s Ataxia News Forums Forums Research, Science, and Trials Reata Pharmaceuticals – Omaveloxolone Update #4

  • Karina Jeronimides

    May 21, 2021 at 11:53 am

    This is good news and I applaud our community for its attempts at moving this sleeping giant called the FDA who will only make exceptions to cure people like Trump and Giuliani.  I am still rather depressed as after 30 years with FA, finally, a drug that palliates the devastating effects of FA is discovered.  But for it to take 2 years just to get the FDA to agree to another meeting [which will take forever and which they will just deny things again while I m still breathing] to re-evaluate the drug’s effectiveness is extraordinarily depressing.  It’s difficult to carpe diem when one is sleep deprived from spasms and neuropathy that wake me up 7 times t night or constipated or having incontinence and wearing a diaper.  I hope they all get FA.

  • Katherine

    May 28, 2021 at 3:16 pm

    I’m with Karina.  They’ve been trying to build hype about a lot of drugs for a long time, but nothing has come of any of them.  I refuse to get excited about anything until I can put it into my body.

    I’ve decided to live the best life I can under the assumption that they’ll never find a cure.  If I’m wrong, I’ll be pleasantly surprised, but I’m not going to pin all my hopes on that.

  • Deleted User

    Deleted User
    May 29, 2021 at 10:17 am

    I don’t intend to do virtue signaling, and I hate how mass media does it so much these days in the politco-social context.

    But I will live my best life now, which involves hope for a treatment. Far from being just virtue, it is also a pragmatic response. Hope is a positive attitude, and this kind of positivity lets the chemical functioning of the body work at a higher level.



Log in to reply.