Shine a Light on Usher Syndrome

Photojournalism and Storytelling

We are bringing awareness to Usher syndrome with our Shine a Light on Usher Syndrome campaign. Through photojournalism and storytelling, we give a face and voice to this rare disease.

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. 


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.

Learn more about our Shine a Light on Usher Syndrome Traveling Exhibit