News Events + Blog
Stay informed, inspired, and connected
Check out our upcoming events, see the latest research updates, or support a personal fundraiser for a member of the Usher Syndrome community!
Upcoming Events
Cocktails & Conversations with USH in Chicago
Thursday, April 16, 2026
Experience a powerful dialogue led by acclaimed author and psychotherapist Rebecca Alexander, who is living with Usher syndrome. She will be joined by Jon Schultz, who is also living with Usher syndrome. Together, their stories will illuminate what it means to navigate their worlds of vision and hearing loss with resilience and purpose.
Past Events
USH X URBAN WILD
Tuesday, December 2, 2025
The Annual Sight, Sound, & Strength Boston Fundraiser was held at Urban Wild on Tuesday, December 2nd in honor of Giving Tuesday. Urban Wild is a restaurant, beer garden, live music venue, bowling alley, and outdoor game space located in Charlestown, MA.
$200,000+
Raised for USH Research
250+
Participants & volunteers
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.
Contact Us
Join our community! We welcome you to reach out
To set up a personal fundraising page, volunteer, or host an event please contact us at: