News + Events
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
Join the Shine a Light Exhibit
June 19-21, 2025 •
Are you attending the USH2025 International Research Symposium? Sign up now to have your photo taken for our Shine a Light on Usher Syndrome Photojournalism Exhibit.
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
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.
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: