February 9, 2009
Contact: Jason Smith / (609) 693-6700Assemblyman Brian Rumpf (R-9), Senator Christopher J. Connors (R-9)
Legislation sponsored by Senator Christopher J. Connors, Assemblyman Brian E. Rumpf and Assemblyman Daniel M. Van Pelt that would designate July 17 of each year as “Chiari Malformation-Syringomyelia Awareness Day” in New Jersey was approved today by the Senate Health, Human Services and Senior Citizens Committee. Syringomyelia (SM) is a neurological disorder in which a cyst or cavity forms within the spinal cord, possibly destroying it over time. Chiari malformation (CM), a form of syringomyelia, is a structural defect in the cerebellum, the part of the brain that controls balance.
The 9th District Delegation’s measure (SJR-61) was introduced in response to a request made by Mrs. Christine Marchesano of Little Egg Harbor who was diagnosed with the condition and underwent successful corrective neck and spinal surgery. Mrs. Marchesano is a community activist committed to raising awareness of the debilitating medical abnormality. She has already hosted an educational forum in Little Egg Harbor and has publically announced her intentions to establish a Southern Ocean County Chiari Support Group.
Connors, Rumpf and Van Pelt jointly issued the following remarks regarding the favorable action taken today on their legislation:
“We are greatly appreciative of the Committee’s support for establishing a “Chiari Malformation-Syringomyelia Awareness Day” in New Jersey as an effective means of raising public awareness of this little-known but debilitating disorder. This legislative effort is based on the tremendous efforts of Mrs. Christine Marchesano to make chiari malformation and syringomyelia household names so that individuals who suffer from this disorder receive the proper medical treatment to alleviate the pain and discomfort they are experiencing.
“Drawing upon her own experiences in suffering from this disorder, Mrs. Marchesano made a compelling case to Committee members for the critical need to raise public awareness. Her testimony shed light on the myriad symptoms associated with this little-known medical condition and their profoundly negative impact on an individual’s quality of life.
“More people suffer from this disorder than is generally known. It is estimated that about 1 in 1, 200 people have chiari malformation with an estimated 800 in New Jersey according to the American Syringomyelia Alliance Project. The average age of diagnosis is around 24 years of age and is more commonly found in women.
“In recognition of Mrs. Marchesano’s tremendous efforts, the Little Egg Harbor Township Committee has proclaimed April 10 as Chiari Awareness Day in that town. It continues to be a privilege to stand by Mrs. Marchesano who, through her courageous and heartfelt acts of compassion, continues to serves as a shining example of the difference one person can make in the lives of others.
“Our Delegation will continue to work with our legislative colleagues in attempting to gain final passage of this Resolution to establish a statewide day of recognition for Chiari Malformation-Syringomyelia Awareness.”
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