Shine a Light on Usher Syndrome Campaign:
What does Usher Syndrome look like?
The Usher Syndrome Society is trying to bring 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 Art. Our goal: to build empathy and awareness about this disease, in the hopes of finding new treatments and, ultimately, a cure.
The first part of our campaign will raise awareness of the importance of registering all people, young and old, who are living with Usher syndrome, so that we can all be prepared for the cutting edge research that is coming our way! Currently researchers are in touch with less than 1% of people 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 an Usher syndrome community with the Usher Syndrome Coalition who connects USH families, researchers and resources.
The second part of our campaign 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.
The Usher Syndrome Society and photojournalist, Evan McGlinn, have begun taking portraits of people with Usher Syndrome to represent the faces of USH as well as collecting their stories and artwork to represent the voices of USH.
A direct way for the Usher Syndrome Society to bring awareness of this rare disease to the general public is through outdoor exhibits in urban settings.These exhibits are part of our campaign Shine a Light on Usher Syndrome. Walkways are created with portraits of people living with USH and their personal story displayed, compelling the viewer to connect with the real person, raising both empathy and awareness. At the exhibits, there are also tunnel vision glasses and earplugs to simulate the experience of going blind and deaf. Information sheets and other educational handouts are available in the hope of identifying more people who unknowingly have Usher syndrome and bringing in funds to help accelerate research. The Usher Syndrome Society exhibits have been successful in raising awareness in hundreds of people passing through, and have been instrumental in connecting researchers, families and philanthropists to all types of Usher syndrome.
The Usher Syndrome Society exhibits will travel both nationally and globally to educate audiences worldwide;Together we can find a cure.