Usher syndrome is the most common genetic cause of combined deafness and blindness. More than 400,000 people are affected by this 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.

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Katharine Rose blogs about how the essence of life seems to always come down to the small and simple things, to the things we often don’t think about, the things we take for granted, the things we forget are gifted to us as human beings: our ability to see and hear, taste and smell, walk and breathe.

I'm grateful to have had so many decades of my life completely unaware of Usher syndrome. But now that I know that I have it, I think often about how Usher syndrome isn't something that everyone knows about.

The primary purpose of the Own the Equinox campaign is to raise awareness about Usher syndrome. The second purpose of Own the Equinox is to raise funds for the Usher Syndrome Coalition.

Usher Syndrome Society, in collaboration with the Usher Syndrome Coalition, is Owning the Equinox and taking New York City by a storm by bringing awareness to Usher syndrome (USH). Check out Usher Syndrome Society's Outdoor Awareness Exhibit in Washington Square Park on September 12th!

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