Well, I was NOT one of the first to get to social media today with the fantabulous news that Neuren has got the go ahead to do a Phase III pivotal trial with Trofinetide. I apologize, it was a day where Rett syndrome didn’t exactly “win” but sure did add some interesting twists and so, while I knew, I had no time to share the news until now!
So, for those who haven’t seen the announcement yet, here you go! Click here!!
Now, the inevitable next question is WHEN?!?! All that can be guessed is it will be next year, which is right around the corner, so within the next few months we will most likely get staggered info like who to contact to show your interest, then probably what the criteria is, or maybe the other way around; until at least that is known, there’s no guessing an approximate date. So hold on to your horses, even though we are all chomping at the bit.
It’s a great bit of news to get in October-instead of just having to be aware of Rett syndrome, Rett syndrome has to BEWARE! We are hot on it’s trail.
Thank you to Margaret Brimble for finding Trofinetide and thank you to Neuren and its shareholders who continue to believe in this drug and who, in their hearts of hearts are sure to want our children to be helped as much as they want to make a killing in the stock market 😉 It’s a win/win you know. We’ll all feel like we’re rich beyond our wildest dreams and they will be rich beyond their wildest dreams, lol. I have faith that scenario is written in the stars.
Thank you to rettsyndrome.org and all the researchers and everyone who has donated their expertise, time and money so we could get to this stage.
So, people we have a go. When the time comes to commit to our children being in the trial, let us be brave, to dare to dream and go into that wild, unknown frontier known as the brain and find the path that will get us through uncharted territory!