A message from Nancy and Jan of the Usher Syndrome Society :
Kidz b Kidz is now the Usher Syndrome Society, but our mission remains the same: The Usher Syndrome Society is a non-profit that uses the Arts to raise awareness and funding for Usher syndrome (USH) to ultimately find a cure.
This last year we have begun to hold pop-up exhibits in outdoor urban settings. These exhibits continue our campaign to “Shine a Light on Usher Syndrome” through photojournalism and the Arts. We create walkways with the portraits you all so generously allowed Evan McGlinn, the NYT photojournalist, to take at last year’s conference. The portraits are displayed with your stories beneath them, compelling the viewer to witness these portraits as real people, raising both empathy and awareness. At the exhibits, we have a simulation table, where we ask viewers to wear both earplugs and simulator glasses, to experience what it feels like to be 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. These pop-up 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.
It is our hope to take these exhibits to both global and national audiences to let people everywhere know about our rare disease.
At the USH Connections Conference this Saturday, we would like to ask all of you to help us continue our work. For those of you who had your portraits taken last year, we would like to update your stories with audio as well as written narrative to add to our photojournalistic approach. For those of you who are attending for the first time, please come and have your portrait taken and share your story with us.
Together, we will make a difference.
Nancy Corderman and Jan Weinshanker
Co-founders, the Usher Syndrome Society