We will be following up with the children as they titrate off the medication and resume life without it. This is the first update to Hayden's story, see his original story click here: Hayden Makris.
We are about a week ...
by Sarah Lemberg Friesth
Our story is not unlike so many other families dealing with Fragile X Syndrome. Our son, Trek, was diagnosed at 22 months old; just shy of turning two. The time when, for most children, the world ...
We will be following up with the children as they titrate off the medication and resume life without it. This is the first update to Logan's story, see his original story click here: Logan Kisamore.
We are officially ...
by Shante Barnes
My daughter Jasmine is 7 years 11 months old. She will be 8 on July 1st. At age 4 she was diagnosed with Fragile X Syndrome. It broke my heart was devastating. At the same time everything she was ...
By Rachelle Gatewood
And So It Begins . . .
Picture it: L. October, 2012. Birthday party of a friend. Lots of people. Lots of noise. People she knows. People she doesn't. 10 mg of STX-209 in her system twice a ...
By Holly Roos
The only thing stronger than fear...
Because sometimes... I just don't know what to say...
Many days have passed. No, really a lot of them have passed. A lot has happened. Many of you have emailed me ...
By Laurie Bridges
STX209 for Caroline really made a difference in lowering her anxiety, frustration, and overall worry. Her little brother said that it made her happier. Now that we have come off of STX209 the anxiety ...
Our experience with STX209 was great, we enrolled in the study at Vanderbilt. We knew a few weeks into the trial we were NOT on the placebo; he was FINALLY connecting with his environment and the pieces were fitting ...
On June 17th, Roche CEO Severin Schwan responded to our entreaties. (Please see here for that response.) We believe that there is no response more fitting than sharing another update. Words are strong, but seeing - well, ...
