Shine a Light on Usher Syndrome

Giving a face, voice, and story to Usher syndrome

Shine a Light on Usher Syndrome is a photojournalism exhibit featuring individuals and families around the world living with Usher syndrome.

Over the last 8 years, the Usher Syndrome Society, with the help of photojournalists Evan McGlinn and Genevieve deManio, has curated the largest collection of portraits documenting the Usher syndrome community around the world. The campaign, aptly named “Shine a Light on Usher Syndrome”, features over 150 individuals and families of different ages and subtypes, who are progressively losing their hearing and vision due to Usher syndrome. The exhibit is one of the Usher Syndrome Society’s primary awareness initiatives, designed to bring a face and voice to a disease most people have never heard of.

Many of the portraits are characterized by the striking contrast of light and shadow across the subject, which alludes to the profound and emotional experience of progressively losing two vital senses. Each portrait is paired with an intimate and honest narrative offered by the individual, which further compels the viewer to consider the lives behind the lens.

Evan McGlinn

Evan is a documentary photographer and regular contributor to The New York Times, as well as The Bill and Melinda Gates Foundation. He has been photographing for the USH Society for many years and has taken hundreds of photographs of people living with Usher syndrome. His photos depict powerful portrayals of Usher syndrome, capturing the complex experience of living with this rare disease through the bold interplay between light and shadow. Having began his career in journalism as a writer for Forbes magazine in New York, Evan is an experienced storyteller and his photographs convey powerful visual narratives that resonate deeply.

Evan’s photographs for our Shine a Light on Usher Syndrome exhibit have been displayed in large formats at prestigious venues including inside Washington Square Park,  on the Jumbotron at Yankee Stadium & Fenway Park during the games, The Mall in Washington, D.C., and on multiple Times Square Billboards.

Genevieve "GIGI" de Manio

Genevieve “Gigi” de Manio, is a distinguished photographer with over twenty-five years of professional photography experience. She is one of America’s pre-eminent wedding and portrait photographers and her work has been featured in dozens of wedding magazines, books, and newspapers including a profile in the New York Times. Gigi has partnered with the USH Society for many years, helping capture the beautiful images of the Usher syndrome community, in addition to providing event photography for many of the USH Society fundraising events.

An image showing our Shine A Light on Usher syndrome exhibit set up throughout a warehouse space. The portraits are scattered around a large room and there are thick wooden beams throughout the room.

Click to explore our virtual exhibit

An awareness exhibit crafted to travel around the world.

Our portraits are formatted to be displayed in all types of spaces and can be deconstructed and shipped around the world. A walk through the exhibit provides an opportunity to engage with the powerful and authentic stories of the diverse network of individuals living with Usher syndrome.

The Shine a Light exhibit has been set up at personal fundraising events, conferences, birthday parties, research symposiums, and more.  If you are interested in hosting an event with our Shine a Light exhibit, please send us a message!