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
It’s Funny… by Brendan Gellman
blog It's Funny... by Brendan GellmanMay 24, 2026 It’s funny, I never dwelled on my hearing loss, but I used to say to myself as a teenager, “Yeah, but there’s got to be nothing worse than losing your vision.” Having been born with a profound hearing loss and wearing...
Finding Usher Syndrome, Unintentionally by Awais Nisar
blog Finding Usher Syndrome, Unintentionally by Awais NisarApril 30, 2026 THE PRESENT Looking back now at the age of 26, the challenges of my childhood finally make sense with the clarity of an Usher syndrome diagnosis. I feel fortunate to have received this news...
The Life I Chose, the Life I Wonder About, and the Life I Love by Chloe Want
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...
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