The First Usher Syndrome Awareness Day in Washington State is September 16th, 2023.
Did you know that Dalton McKittrick, a high school student in our state, submitted a proclamation request to Governor Inslee’s office? As a result, on August 15th, Washington became one of 11 states announcing the third Saturday in September as Usher Syndrome Awareness Day.
More information on Usher syndrome can be found at the National Center on Deaf-Blindness (NCDB): https://www.nationaldb.org/national-initiatives/early/identification-usher-syndrome/ and at Usher Syndrome Coalition: https://www.usher-syndrome.org/
Fact Sheet for Families: https://www.nationaldb.org/media/doc/UsherSyndromeStayConnected_a.pdf
Fact Sheet for Educators: https://www.nationaldb.org/media/doc/UsherSyndromeEducators_a.pdf
Contact the WA DeafBlind Program regarding consultation and training. https://deafblindprogram.wa.gov/
Proclamation
WHEREAS, Usher Syndrome is a relatively rare genetic disorder caused by a mutation in any one of at least 11 genes resulting in a combination of hearing loss and visual impairment, and is a leading cause of combined deafness and blindness; and
WHEREAS, according to the National Institute for Health, Usher Syndrome affects approximately 4 to 17 per 100,000 people; and
WHEREAS, Usher syndrome, which is incurable presently, impacts three major senses in the body:
- Vision: Vision loss in Usher Syndrome is caused by a progressive vision disorder known as retinitis pigmentosa (RP). RP causes the light-sensing cells in the retina to gradually deteriorate, initially resulting in night blindness, followed by a narrowing of the visual field, commonly known as tunnel vision.
- Hearing: Children with Usher syndrome are born with or develop hearing loss. It is estimated that 3 to 6 percent of children who are deaf have Usher Syndrome.
- Balance: Balance is achieved and maintained through input from your eyes, the vestibular organs in the inner ear and the sensory systems of the body, such as the skin, muscles and joints. Thus, people with Usher Syndrome suffer from severe balance issues due to vestibular dysfunction; and
WHEREAS, there are three clinical types: Type 1, Type 2 and Type 3, which are distinguished by the severity and age when the signs and symptoms appear. In the United States, Type 1 and Type 2 are most common; and
WHEREAS, those affected with Usher Syndrome may suffer from depression, anxiety, isolation, loss of independence; and
WHEREAS, the Usher Syndrome community is uniting around the world to spread public awareness but especially to be recognized annually the 3rd Saturday of September;
NOW, THEREFORE, I, Jay Inslee, Governor of the State of Washington, do hereby designate September 16, 2023 as
Usher Syndrome Awareness Day
in Washington, and I urge all people in our state to join me in this special observance.
Signed this 15th day of August, 2023
Governor Jay Inslee