Events

The Campaign

Shine a Light on Usher Syndrome Campaign:

Click here for our most Current Shine A Light on Usher Syndrome Campaign Event

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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 in order to give a face and voice to Usher syndrome through photojournalism and storytelling.

Our goal: to photograph the entire Usher syndrome community worldwide to bring awareness globally to this rare disease in the hopes of finding a cure. To read more about our portraits click here

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 continue 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 because Usher syndrome is considered an orphan disease and does not receive public funding at this point. We are committed to finding a cure.

As of January 2019, the Usher Syndrome Society has donated over $200,000 towards research and accelerating a cure.

The Plan:

The Usher Syndrome Society and photojournalists, Evan McGlinn and Genevieve deManio have been taking portraits of people living with Usher Syndrome to represent the faces of USH as well as collecting their stories to represent the voices of USH.  

We are proud to say the USH Society has the largest globally photographed collection documented of our Usher syndrome community. We will not stop until everyone identified has their own portrait.

Shine a Light on Usher Syndrome are traveling worldwide popup exhibits that vary dramatically in their venues. We create attention grabbing displays both indoors and outdoors to pull the viewer in and connect on a more personal level. Informational sheets are also available to help identify more people who may have Usher syndrome and donation details are included to bring in funds to help accelerate research. 

The Usher Syndrome Society exhibits educate audiences worldwide; Together we are finding a cure.

Click here for our most Current Shine A Light on Usher Syndrome Campaign Event