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Comments from the Rettsyndrome.org Facebook page on the results from the Neuren study


Tears of joy!!!!! Thanks to everyone for the huge effort!!

Awesome! Thanks to all the families involved and all of the researchers who have dedicated themselves to Rett research

Pray, pray, pray that this treatment can really work and that someday Leonie may be able to hold a cup, make a meaningful choice or sound, or even more. Tears in my eyes just thinking of this.

My daughter Ann was in the study and I cannot thank the team of researchers who worked so tirelessly on it. The report from Neuren said it the results exceeded expectations for the full dose group. How exciting for all our Rett Angels!!!

How exciting! Are you allowed to share the changes you saw in your daughter during the trial? Our daughter, Libby (also a Rett Angel), is 5 years old...the hope I feel reading about this is overwhelming. So thankful for families like yours who are paving the way for so many others to have a better life!

OMG this is amazing I’d give anything to hear my baby call me mom again

Happy doesn't come close to describe the feelings in my heart. Thank you!!!!!

Wonderful news thanks to.all the families involved

I hope it brings some hope and help for your Nicole

This is so exciting!

Thanks to all of you for your support and make our dream possible

I just finished reading the article. It's pretty darn amazing. Hopefully your sister may have an opportunity to benefit from this research

I heard back from Aryn Knight at TCH. She said "The sponsor is planning to release the treatment codes (blinding codes) to us to share with participants in late spring 2015." So we will not know for certain who received placebo or drug until then. No word on the open label phase yet. That is the phase where our girls can get the drug before it is available to non-participants


Interesting, there were comments from 3 mothers whose sons had Retts.