NPR Report: Fragile x drug

Re: NPR Report: Fragile x drug

• FlgBride member

  September 2012

  I know of many who are currently taking this drug as part of the trial and it has been life changing for them.
  

  Fragile X is the only known single-gene genetic cause of autism. About 1/3 of all FXers also have a ASD dx, although most possess some ASD characteristics.

  What's interesting to me is that one of the criteria for being part of this drug trial is documentation of the full mutation of the fmr1 gene. In other words, one must have a FX dx to take part in this study.
  

  Another story came out nationally a few months ago describing a day in the life of a boy I know with FX. The title of the story included 'autism', but not FX.
  

  dx: Fragile X Syndrome

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• SallyNada member

  September 2012

  Not true about one must have a FX diagnosis to participate, 

  See Clinicaltrials.gov and search for STX209, one sample

  https://www.clinicaltrials.gov/ct2/show/NCT01288716?term=stx209&rank=7 

  This study has moved to enrolling by invitation only, it's moved on to it's extension.

  We've been in it since Apr 2009, started with the initial study on irratibility, have a dual diagnosis of FX and Autism. In some of the many reports on this I've seen  they've noted it doesn't show positives for improving behavior, but I disagree.  When we started the study we were on 50mg Zoloft, 600 mg Trilpetal, and 30 mg of Abilify, now we are only on 7.5 mg of Abilify and the study med and our behavior is very, very good. 

   

   

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• FlgBride member

  September 2012

  SallyNada:

  Not true about one must have a FX diagnosis to participate, 

  See Clinicaltrials.gov and search for STX209, one sample

  https://www.clinicaltrials.gov/ct2/show/NCT01288716?term=stx209&rank=7 

  This study has moved to enrolling by invitation only, it's moved on to it's extension.

  We've been in it since Apr 2009, started with the initial study on irratibility, have a dual diagnosis of FX and Autism. In some of the many reports on this I've seen  they've noted it doesn't show positives for improving behavior, but I disagree.  When we started the study we were on 50mg Zoloft, 600 mg Trilpetal, and 30 mg of Abilify, now we are only on 7.5 mg of Abilify and the study med and our behavior is very, very good. 

   

   

  Thanks for posting that link! The last I saw, the inclusion criteria included: molecular documentation of the full FMR1 mutation. 

  That is so awesome that you've seen improved behavior!!! I'd be very interested to hear about the improvements that you've seen firsthand. My son is still very young, so we haven't encountered many behavioral issues yet. We are so hopeful with all of the amazing research that's being done currently.
  

  dx: Fragile X Syndrome

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