Usher syndrome is the most common cause of combined deafness and blindness. More than 400,000 people are affected by this genetic disorder worldwide. There is currently no cure for Usher syndrome. 

You have the power to change that.

The Usher Syndrome Coalition is working to raise awareness and accelerate research, while providing information and support to impacted individuals and families. We strive to be the most comprehensive resource for the Usher syndrome community, bridging the gap between researchers and families. Learn more and get involved.


  • Overcoming the Obstacles | Own the Equinox, Day 3

    Every day, a person with Usher syndrome faces numerous obstacles. Despite this, Jessica refuses to let anything stop her.

  • A Little Bit Different | Own the Equinox, Day 2

    Dave is the father of two children, the youngest has Usher syndrome. The family live in Melbourne, Australia, where Dave will run a marathon on 19 September for Usher Syndrome Awareness Day.

  • Perspective | Own the Equinox, Day 1

    Caroline Brown, Fairbanks resident, marathoner, and most importantly, mom to Galen (5) who has Usher syndrome—provides an initial glimpse into her world of running the Equinox marathon as a fundraiser for Usher syndrome research.

  • Own the Equinox: Grassroots II

    It’s time for our grassroots efforts to go global. Let’s make our Usher Syndrome Awareness Day span the world. You can help in ways big and small. We have a size that fits you and whatever you give will help.

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