The Gehrs with author Kyle Bryant at the 2019 rideATAXIA Philly event
As you know, our family travelled to Philadelphia for rideATAXIA in October and a scientific symposium on Friedreich’s ataxia hosted by the Children’s Hospital of Philadelphia today. At the end of the symposium, timed for the financial markets’ close, came the announcement by Reata Pharmaceuticals that the drug Omaveloxolone, the clinical trial drug Michael was and is on, was successful in its final trial, the first time an FA drug has made it this far! FARA and Reata have been working closely with the FDA to design this study so it is fairly certain this drug will be the first approved treatment for Friedreich’s ataxia, the first in 150+ years since the disease was discovered!!!
Michael is currently in extension of this trial, so he is receiving the real drug, not a placebo. We think it is likely he will continue in this extension until the drug is approved, at which time he should be able to get it by prescription.
I’m sure you can imagine the cheers, applause, & tears in the room when the press release was read by the man who founded FARA 30+ years ago. It will still be several years before additional treatments can halt, or even reverse progression, but Omaveloxolone will help keep folks as healthy as possible until such a time that better treatments are approved. Our family is on cloud 9 right now and we wanted to share this great news.
Here’s a link to Reata’s announcement if you’d like more info: