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 with Usher Syndrome: Finding Purpose Through Connection and Advocacy
blog Life with Usher Syndrome: Finding Purpose Through Connection and Advocacy by Laurie McBrideAugust 25, 2025 Living with Usher syndrome has been quite a journey for me marked by evolving challenges, resilience, and self-discovery. It was a journey that started long...
Parenting Through the Unknown
blog Parenting Through the Unknown: A Father’s Journey to Purpose in the Usher Syndrome Community by Jason ObermeierMay 20, 2025 There’s a quiet moment every parent has when you imagine your child’s future. Tiny milestones. Big dreams. Their first day of school....
Discovering Strength After an Usher Syndrome Diagnosis
blog Discovering Strength After an Usher Syndrome Diagnosis by Audrey ChardApril 30, 2025 Facing the Diagnosis Twenty-one years ago, as a high school senior, I received the life-altering diagnosis of Usher syndrome Type 2. When I heard the word “blind” my body shut...
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