New Jersey-2020-SJR50-Introduced

A Joint Resolution designating September of each year as "Chiari Malformation-Syringomyelia Awareness Month."

Whereas, Syringomyelia (SM) is a generic term referring to a disorder in which a cyst or cavity forms within the spinal cord which can expand and elongate over time, destroying the spinal cord. Generally there are two forms of syringomyelia; the first major form relates to an abnormality of the brain called a chiari malformation (CM), named after the physicians who first characterized it; and

Whereas, CM is a structural defect in the cerebellum, the part of the brain that controls balance. Normally the cerebellum and parts of the brainstem sit in an indented space at the lower rear of the skull, above the foramen magnum which is a funnel-like opening to the spinal canal. When part of the cerebellum is located below the foramen magnum, it is called a CM; and

Whereas, CM may develop when the bony space is smaller than normal, causing the cerebellum and the brainstem to be pushed downward into the foramen magnum and into the upper spinal canal. The resulting pressure on the cerebellum and brainstem may affect functions controlled by these areas and block the flow of cerebrospinal fluid, the clear liquid that surrounds and cushions the brain and spinal cord, to and from the brain; and

Whereas, CM has several different causes. It can be caused by structural defects in the brain and spinal cord that occur during fetal development, or it can be caused later in life if spinal fluid is drained excessively from the lumbar or thoracic areas of the spine either due to injury, exposure to harmful substances, or infection; and

Whereas, Since the advent of magnetic resonance imaging, diagnosis of CM has risen dramatically. It is estimated that approximately one in 2,000 people have CM. The average age of diagnosis is about 24 years of age, and is more common in women. According to the American Syringomyelia Alliance Project, Inc., approximately 800 people in New Jersey are diagnosed with CM; and

Whereas, While many people with CM experience no symptoms, when symptoms are present, they usually do not appear until adolescence or early adulthood, but can occasionally be seen in young children. The majority of patients complain of severe head and neck pain. Patients may also complain of dizziness, vertigo, disequilibrium, muscle weakness, balance problems, vision impairment, or hearing problems. Often fine motor skills and hand coordination are affected; and

Whereas, Medications may ease certain pain symptoms; however, surgery is the only treatment available to correct functional disturbances or halt the progression of damage to the central nervous system. More than one surgery may be needed to treat the condition; and

Whereas, An increased awareness of CM/SM in society is essential to ensure the safety and well-being of people with CM/SM and their related disorders; and

Whereas, CM/SM needs to become a household name. Increased awareness would allow medical professionals, employers, and the public-at-large to be more understanding of CM/SM and the abilities and limitations of those suffering from CM/SM so that reasonable accommodations may be made; and

Whereas, It is appropriate that all citizens of the State of New Jersey be better informed about CM/SM and its impact; now, therefore,

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

1. September of each year is designated as "Chiari Malformation-Syringomyelia Awareness Month" in the State of New Jersey, and the citizens of New Jersey are urged to observe the month with appropriate activities and programs.

2. The Governor is respectfully requested to annually issue a proclamation calling upon public officials and the citizens of New Jersey to observe the month with appropriate activities and programs.

3. This joint resolution shall take effect immediately.

STATEMENT

This joint resolution designates September of each year as "Chiari Malformation-Syringomyelia Awareness Month" in New Jersey to increase awareness of this little-known condition.

The joint resolution respectfully requests the Governor to annually issue a proclamation recognizing September as "Chiari Malformation-Syringomyelia Awareness Month" in New Jersey and calls upon public officials and the citizens of New Jersey to observe the month with appropriate activities and programs.