Usher Syndrome Awareness Day
The third Saturday in September is Usher Syndrome Awareness Day, Celebrating our Growing Global Community
Usher Syndrome Awareness Day seeks to bring attention to the most common genetic cause of combined deafness and blindness. By raising awareness around the world, we connect those living with Usher syndrome and accelerate research towards treatments and a cure.
What is Usher syndrome?
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. It is estimated to affect at least 25,000 people in the United States and over 400,000 worldwide. 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.
Why the third Saturday in September?
In 2015, the Usher Syndrome Coalition, an organization of individuals and families working to build the global USH community and speed the search for a cure, declared the third Saturday in September as our global “Usher Syndrome Awareness Day.” This day falls near the autumnal equinox in the northern hemisphere, marking the start of days that contain more darkness than light - a powerful metaphor for the threat of Usher syndrome.
USH Local Social: New England
RESCHEDULED for Saturday, September 16, to open up the social to more people in the community in honor of Usher Syndrome Awareness Day!
All in the Usher community are welcome to attend the New England “USH Local Social,” including individuals with Usher syndrome, parents of children with Usher syndrome, spouses, family members, etc. This event will allow individuals and families to join this "meet and greet" and participate in various workshops led by individuals with Usher syndrome.
The Usher Syndrome Coalition is hosting this event in collaboration with the Usher Syndrome Society, a nonprofit that uses storytelling through the arts, educational events, and collaboration to raise public awareness and research funds towards finding treatments and a cure for Usher syndrome.
PLEASE NOTE: The deadline to submit requests for ASL interpreters is September 1, 2023.
