I have been following this other blog of this guy and his little girl has usher. He's got lots of great information on there, but not only that, he told me about this website called Coalition for Usher Syndrome research. There seems to be loads of great information on there, and I think that everyone should have a look!
I've signed up for a e-mail and all that wonderful stuff!
If you check it out - let me know!
oh, and before I forget - here is the website below!