It is encouraging but it's one of the metrics that's difficult to get an objective measurement since many of the girls are limited in their speech or non-verbal which may explain the large range. These girls are very unwell unfortunately and mood can be impacted by so many external factors.
I think the most important markers are ambulation, and hand-use and verbal communication. Not only are these things easier to objectively measure, but they are also considered key core symptoms of the syndrome.
Here is a practical example that I would like to see with NTI-164. This patient's mother has shared this publicly on the NEU sub forum and writes blog posts about her daughter's experience. They are both very brave women!
Focus here is on the right arm.
Pre Daybue:
Swimming - YouTube
Post Daybue:
July 24, 2024 - YouTube
Edit: I don't mean this to be disparaging for NTI-164, as I am a holder of both companies.
