Saturday, September 21, 2024
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.
In support of the Coalition's community-building efforts, here are a few ways you can get involved this year:
- Ask your state, town or region to recognize Usher Syndrome Awareness Day: Check out this guideline for requesting a state proclamation from your governor. (If you have initiated similar proclamations or activities recognizing Usher syndrome in your country or region, please let us know so we can share with the community!)
- Become an USH VISIONARY: Sign up to make a monthly donation and accelerate research by connecting the global Usher syndrome community.
- Create a fundraiser on Facebook in honor of the Usher Syndrome Coalition on Usher Syndrome Awareness Day.
Are you planning any events on or around Usher Syndrome Awareness Day this year? Let us know and we'll help spread the word! Share your efforts on Facebook, Twitter and Instagram using the hashtag #USHDAY.
