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
One Year Later: Our Journey Through Fear, Community, and Hope by Michael Poalise
blog One Year Later: Our Journey Through Fear, Community, and Hope by 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 by Sarah Bailey
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...
Starting My Journey by Matt Cameron
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...
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