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
USH X Topgolf 2024
December 3rd, 2024
Join us on Tuesday, December 3rd from 6:30pm-9:30pm for our annual Sight, Sound, & Strength Fundraiser at Topgolf Boston-Canton! This will be an evening of high-tech golf, delicious food, and great conversation – all in support of Usher syndrome research! This year all proceeds will go towards our groundbreaking new initiative: Pipeline for Usher Syndrome Research (PUSH) and our Translational Research Grants.
Recent Events
Conversations with USH: Becca Meyers
In honor of Usher Syndrome Awareness Day, the Usher Syndrome Society hosted Conversations with USH in Potomac, MD, where we heard from Paralympic swimmer Becca Meyers about her experience as a world champion athlete living with Usher syndrome.
$7,000+
Raised for USH Research
94
Attendees
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.
Personal Fundraisers
With us, it’s personal. Help us touch more lives affected by USH
Do you or someone you know have Usher syndrome and want to help raise money for Usher syndrome research? We can set up a dedicated fundraising page for you on our website to collect donations that will go directly to Usher syndrome research. Check out our current fundraisers below or contact us to set up a personal fundraising page.
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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: