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Portraits, Stories, and Artwork

Portraits, Stories and Art

Our goal is to put a face and voice to Usher Syndrome through photo journalism and artwork.

Each portrait, each story, and each piece of artwork represent the faces and voices that will bring our campaign to life and eventually lead to a cure!

The first set of portraits were taken at the Usher Coalition Family Conference held in Seattle, WA. On July 9, 2016. These 43 portraits, taken by photo journalist Evan McGlinn, represent all people worldwide living with USH. As part of the Shine a Light on Usher Syndrome campaign, Evan has continued taking portraits throughout the country of people, young and old, living with Usher Syndrome. Each person’s story accompanies their portrait and will be added as we grown our USH community. 

The artwork comes from both Art Events and individuals who send us their drawings. These drawings are made by both people living with USH and others wanting to show their support.

  • The drawings created by those with USH reflect their feelings about the disease and how it affects their lives.
  • The drawings created by others show empathy and support  for those living with USH.