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Review for Usher Syndrome Coalition, Maynard, MA, USA

Rating: 5 stars  

Usher Syndrome (USH) Coalition (USC) is the first NPO I contacted last Spring, expressing my newfound endeavor in life is advocating for the deaf/blind community and to spread awareness of USH around the world. Key components of USC that impresses me is the USH registry database, accelerating research and the ability in connecting with other families living with USH. Last but not least is USC promoted "We need a global USH awareness day"! It was entered into congressional record July 29, 2015. USH awareness day is now annually, the 3rd Saturday in September.

Role:  Board Member