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

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The Life I Chose, the Life I Wonder About, and the Life I Love

The Life I Chose, the Life I Wonder About, and the Life I Love

blog The Life I Chose, the Life I Wonder About, and the Life I Love by Chloe WantMarch 24, 2026 The Life I Chose, the Life I Wonder About, and the Life I Love My name is Chloe Want, and I have Usher syndrome type 1D. Finding out about this condition changed the path...

One Year Later: Our Journey Through Fear, Community, and Hope

One Year Later: Our Journey Through Fear, Community, and Hope

blog One Year Later: Our Journey Through Fear, Community, and Hopeby Michael PoaliseFebruary 22, 2026 So many emotions run through my head every single day. Some mornings I wake up hoping this past year was just a bad dream. I want to go back to a time when I had no...

The Five Stages of Grief: A Journey with Usher Syndrome

The Five Stages of Grief: A Journey with Usher Syndrome

blog The Five Stages of Grief: A Journey with Usher Syndrome by Sarah BaileyFebruary 9, 2026 I had always heard that loss follows a five-stage process: Denial, Anger, Bargaining, Depression, and finally, Acceptance. I never imagined that I would step onto the hamster...

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