The Usher Syndrome Society is a non-profit 501(c)3 that uses storytelling through the arts, educational events, and collaboration to raise public awareness and funds for research to find treatments and a cure for Usher syndrome (USH). The USH Society gives a face and a voice to those living with USH, making this invisible disease visible.

Usher syndrome is the most common genetic cause of combined deafness and blindness.

The Usher Syndrome Society has donated over $1,000,000 to accelerate Usher syndrome research.