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Over the past couple of months we have been holding our breaths as results from the FDA trail of a drug formerly known as NNZ-2566 were coming out. This is the drug closest to market for Rett Syndrome and would be the first ever treatment of the actual disease. Over the weekend, the FDA denied Breakthrough Therapy Status.
That doesn’t mean it doesn’t work. It doesn’t mean the trials will stop. It’s just bureaucratic designations. You see it’s impossible to have standardized testing for Rett Syndrome because the apraxia is so severe. And since the results were all based on clinical observation, it was impossible for the FDA to say beyond a shadow a doubt that this treatment deserved the distinction. At least that’s my understanding of the situation. If you read here from Rett Syndrome’s website you’ll get the official position on it – https://www.rettsyndrome.org/blog/neuren-breakthrough-status-recent-update
Or check out this video from RSRT: https://www.youtube.com/watch?v=udUvAgN04Qc
It’s not a step backward at all – it’s just not as large a step forward. Either way, it’s a step in the right direction.
hi…my name is jamarul…and i’m from malaysia…and i pray every days in my solah …that the drugs for rett syndrome will be found as soon as possible…and i aspire to hear your daughter talking one day (inn shaa Allah)..
Us too! We’re in this fight together!!!
I left you a reply to my other comment 7 months ago about Nrf2 activation. You NEED to research this. I just read about NNZ-2256 and it is a drug used to reduce inflammation via neuroprotective effects of ATF3 upregulation. Nrf2 upregulation is within the SAME family of ARE genes that are responsible to anti-inflammatory properties and neuroprotection. PLEASE read these links and contact me ASAP. Your doctor wants you to take a drug – because that;’s what doctors are paid to do. There is already a natural supplement that will do exactly what you need it to do and it does not require FDA approval. If you contact me, I can put you in touch with the experts. I am just a messenger doing God’s work, not the message. Here, you can read about you NNZ-2256 http://www.ncbi.nlm.nih.gov/pubmed/23765588
Here is a PDF Link for Nrf2 that shows where ATF3 is in the family of ARE genes. https://www.iconceptpress.com/download/paper/12071709134173.pdf
Here is oxidative stress and Rett Syndrome http://www.ncbi.nlm.nih.gov/pubmed/24608581
PLEASE contact me at meunierlisa@hotmail.com or 507-381-3864 I will be happy to give you all the details and connect you with the experts who can explain how the Nrf2 activation works and what they use to do it the most effectively. THANK YOU Lisa