Portraits

Photojournalism and Art

Photojournalism and Art

Our goal is to put a face and voice to Usher syndrome through photojournalism and art.

Each portrait, each story, and each piece of artwork represent the faces and voices that brings our campaign to life and eventually lead to a cure!

The first set of portraits were taken at the Usher Coalition Family Conference held in Seattle, WA. by photojournalist Evan McGlinn, as part of our launch of the Shine a Light on Usher Syndrome campaign. Evan has continued taking portraits and stories representing people from all over the world who either have Usher syndrome, researching Usher syndrome, or are part of a family living with Usher syndrome. These portraits and stories are displayed in exhibits worldwide to educate the public about this rare disease.

In addition, we encourage creating artwork at all our events to express emotion, empathy and support for Usher syndrome and pop up galleries are created spontaneously.