Usher Syndrome Society
Bringing light to Usher syndrome
The Usher Syndrome Society is a non-profit 501(c)3 whose mission is to raise public awareness and research funds for every type of Usher syndrome to find treatments and ultimately a cure for Usher syndrome (USH).
Usher syndrome is the leading genetic cause of combined deafness and blindness.
Awareness
Research
Cure
The Usher Syndrome Society raises awareness through the power of storytelling. By utilizing photojournalism, film, and live events, we share the compelling stories of individuals and families living with Usher syndrome. 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 committed over $3.5 million towards finding treatments and, ultimately, a cure for Usher syndrome.
What we do
Working towards a brighter future
Awareness
Research
Cure
Shine a Light on Usher Syndrome
A traveling global portrait exhibit giving a face and voice to those living with USH.
Sight, Sound, & Strength Events
Combining public awareness and education with experiential fundraising.
Conversations with USH
Rebecca Alexander talks to individuals around the world living with Usher syndrome.
Films
Feature films depicting experience of life with Usher syndrome.
Sense Stories
Video storytelling of everyday life with Usher syndrome.
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!
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.
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.
Help us find treatments and a cure.