Shine a Light on Usher Syndrome

Photojournalism and Storytelling

Each portrait and each story represent the faces and voices that bring our campaign to life.

With the help of photojournalists, Evan McGlinn and Genevieve deManio, The Usher Syndrome Society has created the largest globally photographed collection documenting the Usher syndrome community as part of our Shine A Light On Usher Syndrome Campaign. These portraits, paired with their heartfelt stories, have been transformed into attention-grabbing Art pieces that travel the world in popup exhibits, bringing awareness to USH and helping viewers connect on a more personal level. 

The Shine a Light on Usher Syndrome Campaign also includes short and long films featuring people living with Usher syndrome from around the world. Each film represents the unique, yet shared struggles and triumphs of the progressive loss of two major senses. See our Sense Stories and Films.

Here is a small sampling of our portraits:

Evan McGlinn has been photographing for the USH Society for many years and has taken hundreds of photographs. Every photo evokes 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 living with Usher syndrome.