Portraits

Photojournalism and Storytelling

Photojournalism and Storytelling

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

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!

Here is a small sampling of the multitude of photographs we have taken worldwide. We look forward to representing everyone we identify in the Usher community.

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 evoke emotion with the raw depiction of light and dark playing a significant role in each person's story compelling the viewer to want to know more.

In July 2018, celebrity photographer Genevieve de Manio  also joined our team. Her portraits depict emotions of feeling life to it's fullest which allows the viewer to appreciate the beauty from within. 

Our traveling exhibits portray the realities of Usher syndrome and together we are creating the largest collection of photographs documented of our USH community.