As many of you know, Katelin and I are on the road trip of our lives as we relocate from Massachusetts to California, stopping many times to FINALLY meet some of the many families around America. Now, we are in Texas on the final leg of our half way mark. What an opportunity we have had so far. We have been very honored to have been welcomed into so many homes by gracious and accommodating people.
However, as we go along, spreading awareness, handing out purple cards, it has seemed a bit like time has stood still for us! A month gone and it seems like we just packed up yesterday…ok the day before yesterday ;). But time has NOT stood still in research and yesterday Neuren released the announcement that the Fragile X study with Trofinetide (NNZ-2566) is complete! and TBI close behind.
Such good news. I hope sometimes, that if the FDA does not approve Trofinetide for Rett syndrome first, that an approval for either of these two others can mean off label use for Rett Syndrome. A back door in.
The road through Texas has been monotonous for long time, so it has been a long time without any updates on Trofinetide. Now, today, not so. We’re moving on to New Mexico and Trofinetide is moving on, too, one more step closer to both our destinations.
see below for the update. 🙂