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!

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

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.

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.

Leo Swider

Support Leo

Giovanni Bottazzo

Suport Giovanni

Shawn Hewson

Support Shawn

Cure for Clara and Friends

Support Clara

Leo Swider

Support Leo

Giovanni Bottazzo

Suport Giovanni

Shawn Hewson

Support Shawn

Cure for Clara and Friends

Support Clara

News + Events

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A photo of a group of people at our Sight Sound Strength. Everyone is standing with their hands on top of one another in the center.

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:

781.444.5766