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, ...
Our efforts to be noticed have given us a small victory today. While it was not a response we were hoping for, it is a response nonetheless.
Dr. Severin Schwan Responds: An Open Letter to Parents
To read the original ...
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 Harry’s story, see his original story click here: Harry Zucker. By Jeanie Calenoff
How ...
By Jillian Ransom
Blurry visions of traffic lights, uncontrollable sobbing, and a lifetime of grief and guilt is was I recall while driving home after receiving Bryce’s FX diagnosis 4 years ago. Bryce would be one year ...
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 Rhett’s story, see his original story click here: Rhett Murphy.
By Christina ...
By Corry Miller
For the first time in his life, Arbaclofen gave him the ability to hug us and tell us he loved us. His coping skills were better in regard to transitioning. He was less shy. He was less emotional. He ...
