The Campaign

Shine a Light on Usher Syndrome Campaign

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What does Usher syndrome look like?

The Usher Syndrome Society is bringing awareness to the most common genetic cause of combined deafness and blindness, Usher syndrome.

The Usher Syndrome Society's campaign is called Shine a Light on Usher Syndrome, which aims to give a face and voice to Usher syndrome through photojournalism and storytelling.

The Mission:

The first part of our campaign raises awareness of the importance of registering all people who are living with Usher syndrome, so that we can be prepared for the cutting edge research that is coming our way! Currently, researchers are in touch with less than 1% of those living with Usher syndrome and we believe there are over 400,000 people worldwide who may have USH and can be confirmed through genetic testing and registered. We also want to keep building our Usher syndrome community with the Usher Syndrome Coalition who connects USH families, researchers, and resources.

The second part of our campaign is to raise funds for researchers who are lacking in monetary support; Usher syndrome is considered an orphan disease and does not receive public funding at this point. We are committed to finding a cure.

The Plan:

We are sharing the faces and voices of USH.

With the help of photojournalists, Evan McGlinn and Genevieve deManio, we have created the largest globally photographed collection documenting the Usher syndrome community. These portraits, paired with their heartfelt stories, have been transformed into attention-grabbing displays that travel the world as popup exhibits, bringing awareness to USH and helping viewers connect on a more personal level. We will not stop until everyone identified has their own portrait and has a chance to tell their own story. See more about our portraits here.

The Shine a Light on Usher Syndrome Campaign also includes short and long films from interviews with real people living with Usher syndrome around the world. Each film represents a voice of USH and is a reminder of the unique, yet shared struggle of a world going dark and silent. Watch our Sense Stories here.

The Usher Syndrome Society educates audiences worldwide. Informational sheets are always available to help identify more people who may have Usher syndrome and donation details are included to bring in funds to help accelerate research. 

Together we are finding a cure.