What we Do

We bring awareness and funding to a disease most people have never heard of

It is easy to ignore what we can’t see, misunderstand what we don’t know, and fail to support what we don’t connect with. Sharing personal stories helps bridge this gap.. The Usher Syndrome Society uses photojournalism, films, and immersive experiences to vividly convey the human experience of deafblindness. 

Shine a light campaign

Let us shine a light on Usher syndrome

The Shine A Light On Usher Syndrome exhibit showcases the largest globally photographed collection that documents the Usher syndrome community. With the assistance of renowned photojournalists Evan McGlinn and Genevieve de Manio, we are giving a face and a voice to this rare disease. The powerful portraits, combined with their heartfelt stories, have been crafted into striking art pieces. These portraits are featured in pop-up exhibits around the world, increasing awareness of USH and enabling viewers to connect with the subjects on a more personal level.

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.

A black and white image from our shine a light on Usher syndrome exhibit featuring a young woman looking straight ahead with a serious expression. The photo is dark and half of the woman's face is in dark shadow and the other half is illuminated with light.

Hannah Fitton

I was diagnosed with Usher syndrome when I was 13. I was determined to do everything especially swimming and playing the cello. In 2009 I had the honor of representing Great Britain in the Deaflympics and continued to swim at Colgate University.

A black and white portrait from our Shine a Light exhibit showing an older man looking straight ahead. He does not have a lot of hair and his expression is neutral. He is half in shadow and half in light and there is a gray gradient in the background.

Dale Kosier

I was married, raised 3 daughters, got a bachelor and master’s degrees and worked full time as a Coordinator for Sensory Impaired for the state of WA before being formally diagnosed with Ushers 2.

A black and white portrait from our shine a light on usher syndrome exhibit featuring a young girl with shoulder length hair. She looks straight ahead with a straight face and half of her face is in shadow and the other half in in light.

Clare Weigel

Remember; you, me, and everyone else have all overcome challenges. By doing so, it has prepared us all for the others that will come and gives the silent assurance that we can handle anything that has been placed on the road through this grand adventure called life.

A close up black and white portrait from our shine a light on usher syndrome exhibit of a man with a short beard and mustache. He is smiling wide and looking straight ahead.

Dario Sorgato

I am a man who loves life and strives to live beyond the limits that my eyes and ears are trying to set; I am devoted to help others do the same. Accept the limits you cannot change and go beyond the ones that are just in your mind.

A black and white portrait of a young woman. She has brown hair and is smiling looking at the camera. Half of her face is in light shadow and the other half is in light, and the background is a dark black.

Alexis Martinez

 I struggled with the diagnosis at first, it felt like my future was dark and uncertain. But it has since become my drive and fire to pursue a career in American Sign Language interpreting, advocate for equal accessibility, and I take nothing for granted.

Two people in harnesses, one in a blind fold, at a rock climbing wall at a Sight Sound Strength Event.


Sight, Sound, & Strength

Sight, Sound, & Strength events are pivotal in raising funds for Usher syndrome research and boosting public awareness about this rare disease. These events offer interactive experiences that deepen participants’ understanding of the challenges faced by those living with Usher syndrome. Each event features educational segments that shed light on the condition and the research efforts of the Usher Syndrome Society. All proceeds are dedicated to advancing groundbreaking research happening around the world to find treatments for Usher syndrome.

Interview Series

Conversations with USH

Conversations with USH, hosted by Rebecca Alexander, is an engaging interview series, that illuminates the daily experiences of individuals worldwide living with Usher syndrome. These live events delve into the challenges and inspiring ways people with USH lead rich, dynamic lives. Each interview is professionally filmed, capturing the full breadth of each person’s story and bringing it vividly to life.


USH Society ambassador and board member, Rebecca Alexander sitting between two other people talking on stage

Living with USH

Sense Stories

Sense Stories is an awareness initiative designed to educate the world about Usher syndrome through video storytelling of everyday life with Usher syndrome. Hosted by Rebecca Alexander, the virtual series features heartfelt conversations with people around the globe living with USH. These conversations offer insight into the resilience and daily triumphs, as well as the challenges and uncertainties, that come with USH.

Docuseries & Films

This is USH

Living with Usher syndrome is a uniquely complex reality. Over the last few years, the Usher Syndrome Society has embarked on a journey to document the incredible stories of people living with Usher syndrome through films.  These beautiful stories portray the challenges faced by many living with USH: How to embrace life to the fullest, while navigating going deaf and blind. 

Shop our unique collection

Designed to bring awareness to our senses

Each of these products is crafted with intention, integrating textural elements that remind us of the importance of touch. 100% of the profits from the TACTILE collection go directly back to the Usher Syndrome Society to accelerate treatments and a cure for Usher syndrome.

Help us find treatments and a cure.