Welcome!
We are a group of mothers who had children participating in a drug trial extension for STX209, all of our children have fragile X syndrome (and some have autism too.) We are very upset that the drug trial extension was suddenly cancelled. We are hoping to publicize this issue and make it possible for our children to continue to receive the medication which had been helping them. Please see our “About” page for details.
Since we all have our own stories, we want to share them with you to help explain how this medication helped our children. Please share the pictures and stories, let’s get these sweet faces out to the world so that we can find a way to make this right.
I sent a letter to your site on 7/21, to see whether anyone wanted to join me in writing to the autism caucus run by Congressmen Dolye and Smith. Did you get my email?