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!

Introducing our campaign

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.

Past Events

USH X SPIN Boston Fundraiser

Our annual fundraiser this year took place at SPIN Boston, a ping pong venue and social club! The event was a huge success and we cannot thank all of you for your support. With your help, we raised over $140,000 which will go directly to our Translational Research Grants for 2024.


Raised for USH Research


Participants & volunteers

A photo from a Sight Sound Strength event featuring a young man wearing a blindfold. He is holding a ping pong paddle standing at a ping pong table and he points with one hand towards the camera.

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.

Shawn Hewson

Support Shawn

Cure for Clara and Friends

Support Clara

Shawn Hewson

Support Shawn

Cure for Clara and Friends

Support Clara

News + Events

We are making an impact together
See what we’ve accomplished so far

No results found

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: