AR101

An Assembly Resolution promoting increased public awareness about Stargardt’s Disease.

Whereas, Stargardt’s disease is the most common form of inherited juvenile macular degeneration, and typically causes vision loss during childhood or adolescence; and

Whereas, Stargardt’s disease, also known as fundus flavimaculatus or Stargardt’s macular dystrophy, affects approximately one in 10,000 children in the United States, and is named after German ophthalmologist Karl Stargardt, who discovered the disease in 1901; and

Whereas, The disease causes progressive damage or degeneration of the macula, a small area in the center of the retina that is responsible for sharp, straight-ahead vision; and

Whereas, Stargardt’s disease does not cause a loss of peripheral or night vision, but children affected by the disease may have trouble adjusting between dark and light environments. Color vision is also affected in later stages of the disease; and

Whereas, Stargardt’s is passed along to children when both parents carry mutations of a gene associated with processing Vitamin A in the eye. These mutations allow clumps of lipofuscin, a fatty substance, to accumulate in and around the macula, and as a result, central vision becomes impaired; and

Whereas, Stargardt’s is often diagnosed by the presence of small, yellowish spots of deteriorating tissue in the outer covering of the retina, and symptoms include blurry or distorted vision, an inability to see low lighting, and difficulty recognizing familiar faces; and

Whereas, The progression of symptoms of the disease is different for each child, and those with an earlier onset of Stargardt’s tend to experience more rapid vision loss. Vision loss may decrease slowly at first, then worsen rapidly until it levels off, and most people suffering from the disease end up with 20/200 vision or worse; and

Whereas, Although some research indicates that exposure to bright light may play a role in triggering the retinal damage that occurs with Stargardt’s disease, there is no known treatment for the disease; and

Whereas, Over the past several decades, researchers at the National Eye Institute, part of the National Institutes of Health, have identified various genes that contribute to inherited eye diseases, including Stargardt’s disease. This has led to better diagnostic tests and a greater insight into possible treatments for the disease; and

Whereas, Gene replacement and stem cell based therapies are showing promise for treating Stargardt’s disease, and several human safety trials of these therapies are currently underway; and

Whereas, While research into Stargardt’s disease has led to better diagnostic tests and possible treatment options, a number of services and devices have been developed to help people with the disease carry out daily activities and maintain their independence. These include: hand-held lenses; electronic reading machines; closed circuit video magnification systems; and digital eyewear headsets; and

Whereas, Because Stargardt’s disease is an inherited disease, it is important for people with Stargardt’s or a history of the disease in close family members to undergo genetic testing and counseling; and

Whereas, It is also important to increase the public’s awareness and understanding of Stargardt’s disease, the treatment options being developed through research, and the services and devices that are available to reduce the impact of Stargardt’s and help those with the disease carry out daily activities and maintain their independence; now, therefore,

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

1. The Governor is respectfully urged to promote the public’s increased awareness and understanding of Stargardt’s disease, the importance of genetic testing and counseling, the treatment options being developed through research, and the services and devices that are available to reduce the impact of Stargardt’s and help those with the disease carry out daily activities and maintain their independence through the issuance of a proclamation calling upon public officials and the citizens of this State to promote awareness of Stargardt’s disease with appropriate activities and programs.

2. Copies of this resolution, as filed with the Secretary of State, shall be transmitted to the Clerk of the General Assembly to the Governor of the State of New Jersey.

STATEMENT

This resolution urges the Governor to promote increased public awareness of Stargardt’s disease, a degenerative vision condition that primarily affects children. The public awareness information will include information concerning the importance of genetic testing and counseling, the treatment options being developed through research, and the services and devices that are available to reduce the impact of Stargardt’s and help those with the disease carry out daily activities and maintain their independence.