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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!

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A kayaker paddles in the San Francisco Bay next to a swimmer. The Golden Gate bridge is in the background

Upcoming Events

USH X Swim Alcatraz 2026

October 17, 2026

This October, the Usher Syndrome Society will host a swim from Alcatraz to shore in honor of a crossing that Rebecca Alexander completed more than a decade ago. The event will include 20 swimmers in total: 10 individuals living with Usher syndrome and 10 support swimmers.

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Upcoming Events

Shine a Light Portrait Photography

July 17-18, 2026

The Usher Syndrome Society will be photographing new portraits and collecting stories for our Shine a Light Exhibit at the Usher Syndrome Coalition 2026 USH Connections Conference in Bloomington, MN on Friday July 17th and Saturday July 18th!

MORE DETAILS & SIGN UP

Photos from the Usher Syndrome Society's Cocktail and Conversations with USH in Chicago, which took place at Blue Door Farm Stand.

Past Events

Cocktails & Conversations with USH in Chicago

Thursday, April 16, 2026

This sold out event featured an authentic, humorous, and honest dialogue between acclaimed author and psychotherapist Rebecca Alexander and Jon Schultz, who are both living with Usher syndrome type 3.

SEE EVENT RECAP

Campaigns

Every Second Counts

“Every Second Counts” is our award winning national awareness campaign that has been exhibited in Times Square and continues to be featured on 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.

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