Bill Text: NJ AJR92 | 2020-2021 | Regular Session | Introduced
Bill Title: Designates July of each year as "Cockayne Syndrome Awareness Month" in New Jersey.
Spectrum: Partisan Bill (Democrat 1-0)
Status: (Introduced - Dead) 2020-02-13 - Introduced, Referred to Assembly Health Committee [AJR92 Detail]
Download: New_Jersey-2020-AJR92-Introduced.html
Sponsored by:
Assemblywoman NANCY J. PINKIN
District 18 (Middlesex)
SYNOPSIS
Designates July of each year as "Cockayne Syndrome Awareness Month" in New Jersey.
CURRENT VERSION OF TEXT
As introduced.
A Joint Resolution permanently designating the month of July as "Cockayne Syndrome Awareness Month" in New Jersey.
Whereas, Cockayne Syndrome is a rare genetic disorder characterized by short stature and an appearance of premature aging; and
Whereas, Edward Alfred Cockayne (1880 - 1956), after whom this disease is named, was a London physician who concentrated primarily on hereditary diseases of children; and
Whereas, Cockayne Syndrome occurs in approximately two out of every one million babies born in the United States and Europe combined and there are currently three families in New Jersey with children who are afflicted with Cockayne Syndrome; and
Whereas, Children afflicted with Cockayne Syndrome can exhibit the following symptoms of this disorder: poor growth, microcephaly (smallness of the head), progeria (premature aging), sensitivity to sunlight, moderate to profound developmental and neurological delays, and a shortened lifespan; and
Whereas, There are three subtypes of Cockayne Syndrome, which are distinguished by the severity and age of onset of symptoms. Classical or Type I is the onset of symptoms in early childhood, usually after age one. Type II has much more severe symptoms that are apparent at birth. Type III has the mildest symptoms of the three types and appears later in childhood; and
Whereas, Research indicates that Cockayne Syndrome is the result of mutations in genes which provide instructions for making proteins that are involved in repairing damaged DNA; and
Whereas, Cockayne Syndrome is inherited in an autosomal recessive pattern; therefore, in order for a child to be affected, he or she must inherit a mutation in the same gene from both parents; and
Whereas, There is no specific treatment for Cockayne Syndrome, but the symptoms of the disease may be treated through a number of different therapies, including: physical, occupational, speech, vision, and hearing therapies; and
Whereas, There is ongoing research to study the causes, progression, and biological effect of Cockayne Syndrome, with the hope of creating a treatment that could help to slow or end this debilitating and deadly disease; and
Whereas, Due to the relatively small number of cases each year, it is important to raise awareness of Cockayne Syndrome because it has an extremely significant impact both emotionally and economically on affected families and their extended communities; and
Whereas, Increased awareness of Cockayne Syndrome will assist those families affected by the disease in locating social and medical support more easily through entities such as the Share and Care Cockayne Syndrome Network, which holds an annual meeting each year for families; now, therefore,
Be It Resolved by the Senate and General Assembly of the State of New Jersey:
1. The month of July of each year is designated as "Cockayne Syndrome Awareness Month" in the State of New Jersey to foster an awareness and understanding of Cockayne Syndrome.
2. The Governor is requested to annually issue a proclamation calling upon public officials and citizens of this State to observe "Cockayne Syndrome Awareness Month" with appropriate activities and programs.
3. This joint resolution shall take effect immediately.
STATEMENT
This joint resolution designates the month of July of each year as "Cockayne Syndrome Awareness Month" in New Jersey.
Cockayne Syndrome (CS) is a rare genetic disorder which occurs in approximately two out of every one million newborns each year in the United States and Europe combined. Symptoms of CS include poor growth, microcephaly (smallness of the head), progeria (premature aging), sensitivity to sunlight, moderate to profound developmental and neurological delays, and a shortened lifespan.
It is important for those families affected by CS to raise awareness of this disease. Increased awareness of CS will assist those families with finding social and medical support more easily through entities such as the Share and Care Cockayne Syndrome Network, which holds an annual meeting each year for families.
