Our mission is simple. Awareness • Research · Cure
The Usher Syndrome Society is a non-profit that raises awareness and funds research for Usher syndrome (USH) to ultimately find a cure.
In 2012, two of co-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 is 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 women owned nonprofit with a common cause: to cure Usher syndrome. The powerful women running this organization are Nancy Corderman, Rebecca Alexander, Tori Banu, Peggy Borst and Sophia Boccard.
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 !