Child looking up to the left

Usher Syndrome Society

Bringing light to Usher syndrome

The Usher Syndrome Society is a non-profit 501(c)3 that uses storytelling through the arts, educational events, and collaboration to raise public awareness and funds for research to find treatments and a cure for Usher syndrome (USH).

Usher syndrome is the leading genetic cause of combined deafness and blindness.

Light shining on boy looking up

Awareness

Research

Cure

The Usher Syndrome Society raises awareness by sharing powerful stories of remarkable individuals within our USH community. We believe the more people who know about us, the more we can educate, and the wider our community of support grows.

Our dedication to funding critical research for treatments is at the heart of our mission. To date, the Usher Syndrome Society has contributed over $2 million towards finding treatments and, ultimately, a cure for Usher syndrome.

Light shining on blonde woman looking up

What we do

Working towards a brighter future

An woman in a white lab coat is seated looking into a large microscope in a lab setting

Research

We are always searching for the light in the dark

The Usher Syndrome Society is dedicated to funding cutting edge vision and hearing research in labs across the globe. With the Guidance of our expert Scientific Advisory Board, we can identify and support the most promising Usher syndrome research and collaborations.

News & Events

Help us make the invisible, visible

Check out our upcoming events, see the latest research updates, or support a personal fundraiser for a member of the Usher Syndrome community!

Research Updates

Research Updates

Personal Fundraisers

Personal Fundraisers

A black and white image from our Shine a light on Usher syndrome exhibit showing a young child wearing a headband looking up and off to the side. The child's face is illuminated by light.

Owen Ziegler

I was diagnosed with USH 1D when I was 14 months old. My family and I are learning more about Usher syndrome each day. I have profound hearing loss and use my bilateral Cochlear Implants as a tool to hear.

A black and white image from our shine a light on Usher syndrome exhibit showing an older man holding a cane in one hand. The man has white hair, a white mustache, and wears black rimmed glasses.

Rene Pellerin

I grew up in a family of seven children, with one of my brothers also having Usher syndrome. I am the father of six and married to my wife, and interpreter, Joan, for over 34 years.

Charlotte Jones

I recently graduated from The University of Birmingham, UK,Masters Degree. This is a massive achievement I am proud of despite having to overcome the daily challenges that living with Usher syndrome presents. 

A black and white image from our shine a light on Usher syndrome exhibit showing a young man with blonde hair sitting looking straight at the camera. He is half in shadow and half in light.

Trevor Turner

When I was diagnosed at 19, I realized that I had a limited amount of time with which I could literally “see” the world. This motivated me to seek travel opportunities, study abroad, and work abroad.

A black and white from our shine a light on usher syndrome exhibit showing a portrait of a woman's face. She has short hair and she looks off to the side slightly. Half of her face is in shadow and the other half is in light.

Rosann Rossi

My hopes are that I never stop learning how to adjust to the challenges presented to me and I can continue to live an independent lifestyle. ‘Smile and make the best of everyday, laughter is a must!’ 

Help us find treatments and a cure.