A grid of white and light blue dots forming the Usher Syndrome Society Logo

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).

USH Awareness Our Story Our Team Contact Us

AwarenessResearchCure

Usher syndrome is the leading 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

What is USH?Shine a light 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.

Finding a cureDonate

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.

A professional headshot of a woman, Nancy Corderman. She has medium length brown hair styled with bangs. She has a soft smile and looks directly ahead.

Nancy Corderman

Founder

A headshot of a woman, Rebecca Alexander, Who is wearing a light blue tank top and stands with her hands on her hips. Her brown hair is pulled back and she looks off to the side with a soft smile.

Rebecca Alexander

Board Member, Director of Education and Awareness

A headshot of a young woman, Eliza Corderman, standing with one hand to her chin. She has wavy black hair and wears a black shirt. She looks out straight ahead.

Eliza Corderman

Creative Development Manager

A professional headshot of a woman, Tori Banu. She has blonde hair and she wears a bright blue blazer. She is smiling and looking straight ahead.

Tori Banu

Board Member

A professional headshot of a man wearing a blue button down and suit jacket. He has short gray hair and he is smiling looking straight ahead.

David Corderman

Chairman of the Board

A professional headshot of a woman, Peggy Borst. She has straight light brown hair and she wears a suit jacket. She is smiling and looking directly ahead.

Peggy Borst

Board Member, Director of Research Advocacy Committee

A headshot of a young woman, Hannah Corderman. She has blonde hair and stands with her hands on her hips. She wears a white long sleeve t-shirt from the Tactile collection.

Hannah Corderman

Board Member

A professional headshot of a man, Alan Pinto, wearing a blue suit and dark rimmed glasses. He looks directly at the camera with a small smile.

Alan Pinto

Board Member, Director of Science and Research

A black and white close up image of a woman, Sophia Boccard, with dark hair. She is smiling softly and looking straight ahead

Sophia Boccard

Board Member

A professional headshot of a man, Michael Conn. He is wearing a white button down and gray jacket and he has short gray hair and a beard. He is smiling and looking straight ahead.

Michael Conn

Our Scientific Advisory Board (SAB)

Headshot of Jeff Holt. He is standing in a lab, wearing a green button down shirt and glasses

Jeffrey R. Holt, PhD

Chair of the SAB

A professional headshot of a woman, Shannon Boye, wearing a white lab coat and learning her arm on a table. She has a wide smile, brown hair, and wears dark rimmed glasses.

Shannon Boye, PhD

A professional headshot of a man, Bence Gyorgy. He has a hand on his chin and he is looking off to the side with a wide smile. He has short brown hair.

Bence Gyorgy, MD, PhD

A headshot of a woman, Teresa Nicolson. She has short gray hear and is wearing glasses. She has a soft smile and looks straight ahead.

Teresa Nicolson, PhD

Close up headshot of Eliot Shearer. He wears a blue collared shirt and dark jacket. He has short brown hair and glasses.

Eliot Shearer, MD, PhD

Our Research
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:

781.444.5766

nancy@ushersyndromesociety.org

Help us find treatments and a cure.

Donate Today
A grid of white and light blue dots forming the Usher Syndrome Society Logo

Usher Syndrome Society

1544 Central Avenue

Needham, MA 02492

Join our mailing list!

Navigation

Home

Who We Are

What We Do

Research

Events

Collaborations

News

Resources

Blog Contribution

Privacy Policy

Terms & Conditions

Contact

Phone: 781.444.5766

Support USH Research

Donate
The USH Partner logo and the Candid Platinum Transparency 2024 Seal
© 2025 Usher Syndrome Society