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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

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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 Ayden's story, see his original story click here: Ayden AbouElSeoud. by Cortney ...

Ayden AbouElSeoud Update (Holt, MI)

Ayden, STX209, Update

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Our Fragile X journey began 3 years ago with the official diagnosis of Fragile X. We were led in the direction of Fragile X when an OT working with Liam, asked if he'd been tested for Fragile X. I googled Fragile X the ...

Liam Butler (Shillington, PA)

Liam, STX209

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By Carolyn Jackson Cara is the 3rd and youngest child in our family with Fragile X Syndrome. She was diagnosed at the age of 5, her twin sisters at 14. It was a bittersweet day in that we finally got a name associated with ...

Cara Jackson (Tampa, FL)

Cara, STX209