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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 ...

Jasmine Barnes (Glen Burnie, MD)

Jasmine, STX209

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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 ...

Lauren Gatewood (Converse, TX)

Lauren, STX209

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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 ...

Parker & Allison Roos (Canton, IL)

Allison, Parker, STX209

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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 ...

Caroline Bridges (Kingwood, TX)

Caroline, STX209

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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 ...

Noah Brandon (Memphis, TN)

Noah, STX209

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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, ...

David & Jonathan Wright Update (Visalia, CA)

David, Jonathan, STX209, Update

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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 ...

The CEO of Roche responds…

Roche, STX209, Update

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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 ...

Harry Zucker Update (Skokie, IL)

Harry, STX209, Update

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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 ...

Bryce Ransom (Mobile, AL)

Bryce, STX209

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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 ...

Rhett Murphy Update (Holton, KS)

Rhett, STX209, Update

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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 ...

Charlie Miller (Charles Town, WV)

Charlie, STX209

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By Brooke Stack After months of talking to other mothers, reading several stories and attending doctor’s lectures, all I heard about the STX209 drug trial is how amazing this drug was. I had heard how much it had done for ...

Ryan Stack (Olathe, KS)

Ryan, STX209