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!
