Shine a Light on Usher Syndrome


Over the last couple of years the Usher Syndrome Society has been collecting  portraits and stories of people of all ages living with Usher syndrome. These portraits, taken by NY Times photojournalist Evan McGlinn, give a face and voice to the most common genetic cause of combined deafness and blindness.

The objective of USH Society’s continued campaign is to identify as many people as possible who are living with this rare disease and use art to raise awareness and funds to accelerate research and to find a cure.

This last year they have begun to hold pop-up exhibits in outdoor urban settings. These exhibits continue the campaign to “Shine a Light on Usher Syndrome” through photojournalism and the Arts. They create walkways with the portraits that Usher People 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.

Two Italians with Usher Syndrome were photographed at last year usher Syndrome Symposium in Mainz: Dario Sorgato, chairman of NoisyVision and Alessandro Mennella.

We also found the portrait of Sophia Boccard, who wrote this love story for our blog

During the recent USH2019 Connections Conference held in Philadelphia,. more people had the chance to get their portraits taken so that we can show that we are many and we are all … people!

In this video Dario reads the text written on the pan with his portrait

I have come a long way from the moment that I first heard of Usher syndrome. I travelled the world from North to South and East to West. I crossed the ocean on a sailboat, climbed Mount Everest, walked the Santiago Way, marveled at Machu Picchu, swam in the Barrier Reef, walked the Great Chinese Wall. They say travelling is a metaphor for the inner journey and even if I did not find a place to call home, I enjoyed the way that brought me here, today.

I am a man who loves life and strives to live beyond the limits that my eyes and ears are trying to set; I am devoted to help others do the same. Accept the limits you cannot change and go beyond the ones that are just in your mind. You will discover a wonderful world, a new opportunity, a glimpse of light beyond your imagination.



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