AJR195

Sponsored by:

Assemblywoman MARGIE DONLON, M.D.

District 11 (Monmouth)

Assemblywoman ANNETTE QUIJANO

District 20 (Union)

SYNOPSIS

Designates September 19 of each year as Usher Syndrome Awareness Day.

CURRENT VERSION OF TEXT

As introduced.

A Joint Resolution designating September 19 of each year as Usher Syndrome Awareness Day.

Whereas, Usher syndrome is an incurable autosomal recessive genetic condition that affects an individual’s hearing and vision; and

Whereas, Nearly 50 percent of hereditary deaf-blindness cases are attributable to Usher syndrome; and

Whereas, Usher syndrome affects approximately four to 17 individuals per 100,000 people in the United States; and

Whereas, Hearing loss in individuals with Usher syndrome is caused by the abnormal development of hair cells in the inner ear; and

Whereas, Such hearing loss can, oftentimes, also contribute to severe balance problems; and

Whereas, Vision problems in individuals with Usher syndrome occurs through the progressive degeneration of cells in the retina—causing night-blindness and loss of peripheral vision, eventually leading to tunnel vision, cataracts, and cysts in the macula; and

Whereas, There is currently no cure for Usher syndrome and treatment consists of management of hearing, vision, and balance problems; and

Whereas, Early diagnosis of Usher syndrome can help individuals by tailoring educational programs to the severity of the individual’s condition, and can include hearing aids, assistive listening devices, cochlear implants, auditory training, and American Sign Language; now, therefore,

Be It Resolved by the Senate and General Assembly of the State of New Jersey:

1. September 19 of each year is designated as Usher Syndrome Awareness Day to promote greater awareness of Usher syndrome.

2. The Governor may annually issue a proclamation calling upon public officials and citizens of the State to observe Usher Syndrome Awareness Day with appropriate activities and programs.

3. This joint resolution shall take effect immediately.

STATEMENT

This joint resolution would designate September 19 of each year as Usher Syndrome Awareness Day in the State. Usher syndrome is an incurable autosomal recessive genetic condition affecting roughly four to 17 individuals per 100,000. The condition causes hearing and vision problems and there is currently no cure. Early diagnosis of Usher syndrome can help individuals by tailoring educational programs to the severity of the individual’s condition, and can include hearing aids, assistive listening devices, cochlear implants, auditory training, and American Sign Language.