Who We Are

Let us shine a light on who we are

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).


Usher syndrome is the most common genetic cause of combined deafness and blindness. We are working towards a cure, and together, we can make a difference in the lives of those affected by USH. Help us shine a light!

An image showing our Shine A Light on Usher syndrome exhibit set up throughout a warehouse space. The portraits are scattered around a large room and there are thick wooden beams throughout the room.

Click to explore our virtual exhibit

Our Story

We understand because we’re fighting with you

In 2012, two of founder Nancy Corderman’s children were diagnosed with 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.

Motivated by this profound challenge, the Usher Syndrome Society was established to educate the public and hasten research, recognizing these as critical steps toward developing effective treatments for Usher syndrome.

Rare diseases like USH often remain invisible—they affect too few people to attract widespread attention, leading to insufficient research and funding. We often overlook what we cannot see, remain unaware of what we do not understand, and cannot support what we do not connect with. Sharing personal stories bridges this gap. This is our story.

Hannah Corderman is one of Founder, Nancy Corderman’s, two children living with Usher syndrome.

Our Board and Team

We are a growing ‘Society’ that includes individuals, families, clinicians, and scientists united by a shared purpose—to shape the future of Usher syndrome.

Our Scientific Advisory Board (SAB)

A woman and man sit at a table at a Sight Sound and Strength event at Harpoon Brewery In Boston. They are smiling and holding headphones up to their ears.

Contact Us

We would love to hear from you

For any questions about the Usher Syndrome Society please contact us at:


Help us find treatments and a cure.