retts syndrome

This can be found on Facebook.

I have left the mothers name off..

Houston Clinical Trials for Rett Syndrome
10 hours ago
Hi All, It's been along time since I have posted. Nothing much has changed for Amy but today I got a call from one of the team at the study in Houston. If you haven't heard yet, they have been fast tracked. This means they don't have to wait until phase 3 of this trial to submit info to FDA. They plan to have all info they have collected thus far to FDA by March or April. They also have started a 28day placebo/med trial. I wish we could go again we certainly would if we could. I sure hope that those of you out there that can will participate in this study it's gained momentum but still need applicants to get job done! Remember this is for all the Rett girls/women of the world. She also reminded me that what Amy received was a very low dose of NNZ so there's so much more potential for our girls to improve. Amazing days but really hard to be patient. I know some maybe thinking I'll just wait till it's approved but if no one participates in the study the approval will not happen. They still need to get through this phase of 28day study trials. Please consider being a part the team at Houston are wonderful people and they will make sure your well taken care of!! Blessings to all.