Usher Syndrome Society

Sense Stories is a new way to help educate the world about Usher syndrome through video storytelling, of everyday life with Usher syndrome. While our world is experiencing unprecedented times and people are feeling isolated, it feels even more important than ever to reach out to our Usher syndrome community and project their voices and stories to get a sense of what it means to be living with this rare disease.

Over the next year, Rebecca Alexander will have heartfelt conversations with many people living with Usher syndrome from around the world. We will be sharing those stories here. 

Expect many emotions as we get to know these incredible individuals up close.