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.

Exterior photo of Topgolf Boston-Canton
A young woman, Becca Meyers, is seated at the edge of a dock wearing a one piece swimsuit looking at a sunrise over a lake.

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.

Giovanni Bottazzo

Suport Giovanni

Shawn Hewson

Support Shawn

Cure for Clara and Friends

Support Clara

Giovanni Bottazzo

Suport Giovanni

Shawn Hewson

Support Shawn

Cure for Clara and Friends

Support Clara

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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