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Check out our upcoming events, see the latest research updates, or support a personal fundraiser for a member of the Usher Syndrome community!

Campaigns

Events

Blog

A mockup of the Artechouse NYC space featuring black and white portraits from the Shine a Light on Usher Syndrome exhibit on the walls and floor

upcoming event

See Us, Hear Us: An Immersive Exhibition

Thursday, October 23, 2025

Join the Usher Syndrome Society at Artechouse NYC on October 23rd for an immersive gallery experience that brings over a decade of storytelling to life.

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Past Events

USH X Topgolf 2024

This year’s annual Sight, Sound, & Strength Fundraiser was held at Topgolf Boston-Canton. The event was a huge success and marked our largest annual fundraiser so far!

$200,000+

Raised for USH Research

250+

Participants & volunteers

See Event details

Crowd gathered at the USH X Topgolf 2024 fundraising event for the Usher Syndrome Society

Campaigns

Every Second Counts

“Every Second Counts” is a groundbreaking awareness campaign featured on nine Times Square billboards and throughout digital streaming platforms across the country. The campaign underscores the sense of urgency felt by individuals living with Usher syndrome, who are seeking to live full, meaningful lives, while actively striving to find effective treatments and ultimately a cure.

Learn More