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
Life in the Lab: How Do We Know If a Potential ASO Therapy Works? by Katerina Anamisis
blog Life in the Lab: How Do We Know If a Potential ASO Therapy Works? Spoiler: It's more complicated than you might think. by Katerina AnamisisAugust 26, 2026 In my last blog, The Diagnosis that Changed my Trajectory, I shared how my brother’s diagnosis of Usher...
The Starting Line by Sara Jessick
blog The Starting Line by Sara JessickAugust 25, 2026 My First Usher Syndrome Conference I stood near my apartment door, my carry-on suitcase full of clothes that I had carefully curated for several “first-impression moments” in my immediate future. And despite being...
Connecting the Dots by Nathan Stockton
blog Connecting the Dots by Nathan StocktonJuly 8, 2026 I can still remember the color of the optometrist’s eyes, brown, shaded with concern, as she gave me the first answer in a trail of questions I never dared to ask. I was just there for a pair of glasses, I...
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