Who We Are

Mission & History

Our mission is simple.  Awareness • Research Cure

The Usher Syndrome Society is a non-profit 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). 

In 2012, two of founder Nancy Corderman’s children were diagnosed with a rare genetic disorder called Usher syndrome (USH); the most common genetic cause of combined deafness and blindness. Two out of her four children are progressively losing both their eyesight and hearing.

The Usher Syndrome Society was born out of the recognition that a cure for Usher syndrome needed to be found as soon as possible. Realizing that the two most important ways to accelerate research are through educating the public about this orphan disease and raising funds, the Usher Syndrome Society began using photojournalism and educational events with the hope of bringing USH to the forefront of rare disease research.

The Usher Syndrome Society is a nonprofit with a common cause: to find treatments and a cure for Usher syndrome. The powerful people running this organization are Nancy Corderman, Rebecca Alexander, Tori Banu, Peggy Borst, David Corderman, Sophia Boccard, Hannah Corderman, and Alan Pinto. To learn more about them click here

The USH Society members are varied. Some have Usher syndrome, some are parents of children with Usher syndrome, and some are friends that just want to help.

We are making a difference together!