September 19, 2026
WHEREAS, Usher syndrome is a rare genetic condition caused by a mutation in any one of at least 10 genes resulting in a combination of hearing loss and progressive vision loss, and is a leading genetic cause of combined deafness and blindness; and,
WHEREAS, more than 400,000 people are affected by this genetic disorder worldwide; and,
WHEREAS, Usher syndrome impacts three major senses in the body and with no available treatment for;
Hearing: Children with Usher syndrome are born with or develop hearing loss. It is estimated that upward of 10 percent of babies born with congenital bilateral, sensorineural hearing loss have Usher syndrome.
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.
Balance: Balance is achieved and maintained through input from the 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 can experience severe balance issues due to vestibular dysfunction; and,
WHEREAS, Usher syndrome has no impact on intellectual abilities; and,
WHEREAS, there are three clinical types: Type 1, Type 2, and Type 3, which are distinguished by the severity and age of onset of symptoms. There are at least ten different genetic subtypes of Usher syndrome, as determined by the causative genes. DNA testing is the only reliable way of determining the true genetic type; and,
WHEREAS, because of limited public awareness, those affected with Usher syndrome may experience delayed diagnosis, misdiagnosis, lack of access to services and support, lack of job training and opportunities for employment, and an impact on daily living and mental health; and,
WHEREAS, the Usher syndrome community is uniting around the world to spread public awareness and especially to be recognized annually on the 3rd Saturday of September;
NOW, THEREFORE, I, Gretchen Whitmer, Governor of the State of Michigan, do hereby designate September 19, 2026, as USHER SYNDROME AWARENESS DAY in Michigan.
