What is Usher syndrome?
It is the most common genetic cause of combined deafness and blindness.
Usher syndrome (USH) is a rare inherited condition - passing from parents to children - that impacts three major senses in the body: vision, hearing and balance.
There are three clinical types of Usher syndrome: Type 1 usually causes profound deafness at birth, vestibular (balance) dysfunction and progressive vision loss; Type 2 usually causes moderate to severe hearing loss at birth and progressive vision loss; Type 3 usually causes later onset progressive hearing loss and progressive vision loss. It is estimated to affect at least 25,000 people in the United States and over 400,000 worldwide.
There is currently no cure for Usher syndrome, but there is a growing USH community. Building a community leads to treatments and a cure.
The Usher Syndrome Coalition is the only organization in the world working to find and support every individual and family living with USH, regardless of where they live, what type of USH they were born with, or their method of communication. Our mission is to raise awareness and accelerate research while providing information and support to individuals and families affected by Usher syndrome. We strive to be the most comprehensive resource for the Usher syndrome community, bridging the gap between researchers and families. Learn more and get involved.
The Usher Syndrome Coalition: connecting the global Usher community.
"As an organization formed on the pillars of community and collaboration, the Usher Syndrome Coalition is thrilled to partner with CUREUsher, an alliance we're confident will grow and strengthen our global USH family. The launch of our two-fold collaborative awareness initiative will harness the energies of the USH community and the clinicians who serve them so that one day, everyone with this diagnosis can be supported by a doctor who is knowledgeable about Usher syndrome." - Krista Vasi, Executive Director
You're invited to join the Usher Syndrome Coalition in recognition of the 7th annual global Usher Syndrome Awareness Day. This special day belongs to our community and falls on Saturday, September 18th this year.
Becca Meyers is the only Paralympic swimmer on Team USA who is both deaf and blind. This dual sensory loss has far-reaching effects on an individual’s quality of life and engagement in society. We invite the USOPC to join together with the Usher Syndrome Coalition and other organizations supporting the deafblind community to address and resolve the underlying issues resulting in the denial of Ms. Meyers’s request for essential accommodation.
“Heartbroken” Becca Meyers, a deafblind Paralympic athlete who has Usher syndrome, was told to navigate Tokyo alone. Instead, she takes a powerful stand for future generations.
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