September 17, 2022: Usher Syndrome Awareness Day

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, more than 400,000 people are affected by this genetic disorder worldwide, with as many as 25,000 of those in the United States; and,

WHEREAS, Usher syndrome, which is currently incurable, impacts three major senses including vision, hearing, and balance; progressive vision loss is due to the deterioration of light-sensing cells in the retina (retinitis pigmentosa); sensorineural hearing loss is often present at birth but can develop or worsen with age; balance issues occur from dysfunction of the vestibular organs in the inner ear; and,

WHEREAS, there are three clinical types of Usher syndrome classified by the severity of symptoms and age at which they first appear, and at least eleven different genetic types that can only be differentiated by DNA testing of the various genes; and,

WHEREAS, those affected with Usher syndrome may suffer from depression, anxiety, isolation, or loss of independence which can be impacted further by the lack of public awareness of the syndrome; and,

WHEREAS, the Usher syndrome community is uniting around the world to spread public awareness of this life changing condition and to be recognized annually on the third Saturday of September;

NOW, THEREFORE, I, Gretchen Whitmer, governor of Michigan, do hereby proclaim September 17, 2022, as Usher Syndrome Awareness Day in Michigan.