Usher Syndrome Society

Financials

The Usher Syndrome Society is committed to managing all donations with responsibility and transparency, ensuring each contribution is directed to its intended purpose, whether that be a specific subtype, research initiative, or awareness campaign. 

The Usher Syndrome Society is the only organization dedicated to advancing treatments for all types of Usher syndrome. Your support makes it possible to identify potential therapeutic targets, develop innovative approaches, conduct essential preclinical studies to assess safety and effectiveness, initiate clinical trials, and support the process of bringing new treatments into clinical practice.

 

The Usher Syndrome Society takes all contributions seriously and we carefully track all donations to ensure they are used for their intended purpose. We undergo an annual independent audit as required by law, and our IRS Form 990 is available on our website through Candid.

 

If you would like a copy of our most recent audit report, please contact [email protected]

Annual Reports

Cover Page of the Usher Syndrome Society 2025 Impact Report. The cover features a portrait of a little girl from our Shine a Light on Usher Syndrome Exhibit.

2025 Impact Report

Explore more Blog posts

Starting My Journey

Starting My Journey

blog Starting My Journey by Matt CameronDecember 15, 2025 I'm currently 28 years old. I was born and raised in Newcastle, New South Wales (Australia), but I currently live in Sydney. I was diagnosed with Usher syndrome Type 2, which means I have the typical...

See Us Hear Us: An Immersive Gallery Fundraiser

See Us Hear Us: An Immersive Gallery Fundraiser

blog See Us Hear Us: An Immersive Gallery Fundraiserby Pamela AasenJanuary 12, 2026 On Thursday, October 23, I had the privilege of attending the incredible ‘See Us Hear Us’ fundraising event at Artechouse NYC, a premier venue in Chelsea known for hosting...

Moving Forward

Moving Forward

blog Moving Forward by Americo CastilloNovember 29, 2025 Every 4 to 17 per 100,000 people—approximately 400,000 people worldwide—live with Usher syndrome. As a 17-year-old junior at Soquel High School in Capitola, California, I am one of them. Like any other student,...

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