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
2025 Impact Report
Explore more Blog posts
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
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,...
Celebrating My Grandsons on Usher Syndrome Awareness Day
blog Celebrating My Grandsons on Usher Syndrome Awareness Day by Fran HickmottOctober 13, 2025 Every year when Usher Syndrome Awareness Day arrives, my mind turns to the journey of my grandsons, Ethan and Gavin. When Ethan was on the way 24 years ago, I pictured a...
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