The Campaign

Shine a Light on Usher Syndrome Campaign

The Usher Syndrome Society is bringing awareness to Usher syndrome through a campaign called Shine a Light on Usher Syndrome. This initiative aims to give a face and voice to Usher syndrome through photojournalism and storytelling.

Why Shine A Light On Usher Syndrome?

Approximately 400,000 people are living with Usher syndrome worldwide. Currently, researchers are in touch with less than 1% of those people. Our goal is to raise awareness of Usher syndrome through photojournalism and film to identify, register, and connect people in our community to potential Usher syndrome treatments with our partner, the Usher Syndrome Coalition.

Equally important, the Usher Syndrome Society urgently needs to raise the necessary funds to support cutting-edge research so we can accelerate treatments and a cure for this time-sensitive rare disease.

Learn more about our Global Portrait Exhibit