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!

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.

Upcoming events

Conversation with Becca Meyers

September 20th, 2024

The Usher Syndrome Society is hosting our next Conversations with USH in honor of Usher Syndrome Awareness Day. This event will showcase a short film created by The Usher Syndrome Society about paralympic swimmer Becca Meyers, and her experience as a world champion athlete living with Usher syndrome. Following the debut of the film, Rebecca Alexander, psychotherapist and recognized keynote speaker, who is also living with Usher syndrome, will engage in a heartfelt interview with Becca about her ongoing journey. 

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.

Shawn Hewson

Support Shawn

Cure for Clara and Friends

Support Clara

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