Usher Syndrome Awareness Day Date in the current year: September 21, 2024

Usher syndrome, also known as Usher–Hallgren syndrome or Hallgren syndrome, is a rare genetic disorder caused by a mutation in any one of several different genes, of which there are at least 11, which results in a combination of hearing loss and gradual visual impairment.

The hearing loss (sometimes accompanied by balance problems) is caused by a defective inner ear, and visual impairment results from retinal degeneration (retinitis pigmentosa). The first symptom of retinitis pigmentosa is usually night blindness, followed by the gradual loss of peripheral vision.

Usher syndrome is divided into three subtypes, depending on the genes affected and the onset of hearing loss:

• Usher syndrome type I: deafness or profound hearing loss at birth, loss of vision begins by age 10, balance problems.
• Usher syndrome type II: moderate to severe hearing loss (no deafness) that begins in early childhood, loss of vision begins in the second decade of life, no balance problems.
• Usher syndrome type III: hearing loss begins in childhood, loss of vision begins in the second decade of life, no balance problems.

Types I and II are the most common, whereas type III is very rare and affects only certain ethnic groups.

There is no cure for Usher syndrome; its management is focused on helping patients to cope with hearing and vision impairment. It may include hearing aids or cochlear implants, hearing training, sign language training, low vision aids, and vision rehabilitation services. Researchers are currently studying the possibility of using gene therapy to treat Usher syndrome.

Usher Syndrome Awareness Day is promoted by the Usher Syndrome Coalition, a US-based non-profit organization working to raise awareness of and accelerate research for Usher syndrome, as well as to support individuals living with Usher and their families around the globe.

Since 2015, the Coalition has been working to have Usher Syndrome Awareness Day recognized by the United States Congress. So far, a number of state proclamations have been issued. As of 2023, U.S. states that had proclaimed the third Saturday of September as Usher Syndrome Awareness Day at least once included Alabama, Arizona, Colorado, Connecticut, Idaho, Illinois, Iowa, Kansas, Kentucky, Louisiana, Maine, Maryland, Michigan, Minnesota, Mississippi, New Jersey, Ohio, Oklahoma, Oregon, Pennsylvania, Tennessee, Texas, Virginia, Washington, Wisconsin, and Wyoming.

There are many ways to get involved with Usher Syndrome Awareness Day. You can educate yourself about the syndrome and help to educate others by posting links to various information resources, donate to an organization that funds research into Usher syndrome or supports people living with the syndrome, and spread the word on social media with the hashtags #UsherSyndromeAwarenessDay and #UsherSyndromeAwareness.