A grid of white and light blue dots forming the Usher Syndrome Society Logo

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.

MEET OUR PHOTOGRAPHERS
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.

Lauren Petracca

Lauren Petracca is a freelance photojournalist based in Rochester, NY who works with editorial and nonprofit clients. She uses photography to examine the fragile relationship between people and the environment and how climate change and environmental practices impact culture, daily life, and mental health. She is a frequent contributor to publications such as The New York Times, Associated Press, The Washington Post, The Wall Street Journal, and has partnered with nonprofits such as AARP, Songwriting With: Soldiers, Earthjustice, and Southern Environmental Law Center. Lauren’s work has been recognized by The Society of Environmental Journalists, the Covering Climate Now awards, The Society for Features Journalism, and the NYS Associated Press Awards. She first began working with Usher Syndrome Society in 2024 capturing portraits of those living with Usher Syndrome during the annual USH Connections Conference in Rochester, NY.

A portrait from the Shine a Light on Usher Syndrome Exhibit featuring a young boy with tan skin and dark hair. He has on a striped collared shirt and he wears blue glasses. The background is a gray gradient and the boy looks straight ahead with a serious expression. A portrait from the Shine a Light on Usher Syndrome Exhibit featuring a father and mother and their young baby. The mother has light blonde hair and the father has dark hair and wears glasses. The hold a baby girl who wears a bow on her head and a red dress. They all look seriously ahead. The background is dark black. A portrait from the Shine a Light on Usher Syndrome Exhibit featuring a young boy with light skin and short brown hair. His arms are by his sides and he wears a light blue collared shirt. He has a big smile on his face. The background is a rich black. A portrait from the Shine a Light on Usher Syndrome Exhibit featuring a close up photo of a woman wearing a unique pair of orange and black glasses. Half of the woman's face is in shadow and the other half is in light. The woman looks straight ahead through the glasses. A portrait from the Shine a Light on Usher Syndrome Exhibit featuring two brothers. One appears slightly older and is behind the younger brother. They are wearing collared shirts and they both wear glasses. The background is a gradient dark gray and both of the boys are half in light and half in shadow. A portrait from the Shine a Light on Usher Syndrome Exhibit featuring an older man with a gray beard wearing a cap. He looks straight ahead and wears a dark blue shirt. The background is a gradient dark gray and the man is half in light and half in shadow. A portrait from the Shine a Light on Usher Syndrome Exhibit featuring an older man and an older woman sitting side by side. They both have light skin and long grey hair. The man sits taller than the woman. Both of them are illuminated by light on one side of their face. The man wears a Hawaiian shirt and he looks straight ahead with a serious expression. The woman next to him wears glasses with oval lenses and thin wire frames. She has a hint of a smile in her expression. She wears a black shirt with buttons down the center. There is a gray gradient background behind them. A portrait from the Shine a Light on Usher Syndrome Exhibit featuring an older woman with white hair holding a cane and looking straight ahead. She wears a blue shirt and she is half in shadow and half in the light. A portrait from the Shine a Light on Usher Syndrome Exhibit featuring a young woman with long brown hair wearing a hat and glasses and holding a cane. The background is dark black and the woman looks straight ahead. A portrait from the Shine a Light on Usher Syndrome Exhibit featuring two girls seated on the floor next to each other and with a golden retriever dog. Both girls look ahead and are smiling with wide smiles. One of the girls is older than the other girl. The younger girl is seated with one of her knees pulled up into her chest and she wraps one arm around her leg. She has medium-length light brown hair and she wears glasses that have a pink frame on the bottom of the front lens. She wears a white shirt and blue skirt with yellow polka dots. The older girl is seated with her legs crossed right behind the golden retriever. She has shoulder length brown hair and she wears glasses that have brown frames. She wears a bright orange shirt. The dog looks ahead and he wears a black harness. There is a dark gradient background behind them. A portrait from the Shine a Light on Usher Syndrome Exhibit featuring a young woman with medium length brown hair looking off to the side and up. She wears a light pink shirt and we can see the profile of her face. The background is a dark black. A portrait from the Shine a Light on Usher Syndrome Exhibit featuring a woman seated holding a young boy. The woman has brown hair and is smiling and the boy sits in her lap with a big smile as she holds around his waist. The background is a dark black color. A portrait from the Shine a Light on Usher Syndrome Exhibit featuring a young girl with dark skin and beads in her hair. She is gazing off to the side and she wears a teal t-shirt. The background is dark black. A portrait from the Shine a Light on Usher Syndrome Exhibit featuring a young boy with tan skin and dark hair. He is wearing a plaid button down shirt and he looks straight ahead. The background is a gradient dark gray and half of the boy's face is in shadow and the other half is in light. A portrait from the Shine a Light on Usher Syndrome Exhibit featuring a young woman with tan skin and brown curly hair. The woman's face is half in shadow and half in light and she wears a plaid button down shirt. The background is a gray gradient.
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!

CONTACT US
Somerville, MA
Potomac, MD
New York City, NY
Cleveland, OH
Melbourne, AUS