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. These portraits, paired with poignant narratives, weave profound expressions of light and shadow that compel viewers to explore the lives behind the lens, stirring emotions and curiosity about what it is like to progressively lose both hearing and vision.

The campaign, aptly named “Shine a Light on Usher Syndrome”, features over 150 individuals and families who are living with Usher syndrome. The exhibit is intended to not only bring awareness to this rare disease, but also helps identify more people living with USH.

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!