Shine a Light on Usher Syndrome Campaign:
What does Usher Syndrome look like?
Arts for USH (KbK) and the Usher Syndrome Coalition are partnering to bring awareness to the most common genetic cause of combined deafness and blindness, Usher Syndrome.
The Arts for USH campaign is called Shine a Light on Usher Syndrome in order to give a face and voice to Usher Syndrome through photo journalism 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 have are living with Usher Syndrome, so that we can all be prepared for the cutting edge research that is coming our way! Currently there are only 1,000 people registered worldwide and we believe there are over 400,000 people who may have USH and can be confirmed through genetic testing.
The second part of our campaign is raising funds to update the registry and maintain it annually. Any funds beyond this will go to helping families receive genetic testing, which is crucial in determining the exact type of Usher Syndrome they have. Lastly, funds will be used to help researchers who are lacking in monetary support because USH is considered an orphan disease and does not receive public funding at this point.
Arts for USH 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.
Arts for USH is currently holding Art Events nationwide to give insight into Usher Syndrome from people who are living with USH, as well as facts about the disease. Everyone attending will watch our Usher Syndrome video, listen to our speakers and then draw what they are feeling. This is empathy in action!
We will connect a portrait, a drawing, a story and Art Event through social media, traditional media and other creative ways to Shine a Light on Usher Syndrome everywhere around the world. The campaign will continue indefinitely until we can identify and register as many people as possible and eventually find a cure.