SHERBURNE – The Chiari & Syringomyelia Foundation (CSF), a national non-profit organization commited to finding a cure for various debilitating neurological disorders, has announced plans for the unite@night walk in Sherburne.
Unite@night will be a one-mile casual evening walk being held on Saturday at 6p.m. at the Sherburne-Earlville Central School Track in Sherburne. The walk, part of the national effort by CSF, will bring together those local residents suffering with the devastating effects of Chiari malformation, syringomyelia, Ehlers-Danlos, hydrocephalus, intracranial hypertension, dysautonomia and related disorders.
The battle of these diseases can mean a lifetime of pain for over one million Americans. The CSF has established these unite@night walks to support CSF Chapters across the U.S. to provide education and increase awareness while funding research projects that can potentially find answers to help those who are fighting these disorders.
“We are dealing with complx issues of symptoms, diagnosis and treatment. There is no single objective diagnostic test for Chiari. There are many combinations of symptoms and the disorders can develop with age,” said Dorothy Poppe, CSF Executive Director.
Those interested can register at unitenight.myetap.org/sherburne/
Anyone who raises $25 will receive an illuminated balloon and those who raise $50 or more will recieve a unite@night t-shirt and an illuminated balloon.
The Chiari I malformation is a congenital malformation in which the back compartment of the skul is formed too small, resulting in crowding of the neurological tissues. The lower part of the cerebellum, called the cerebellar tonsils, hangs down through the opening at the bottom of the skull and causes blockage of spinal fluid to the spinal canal. This often brings on neurological symptoms.
Syringomyelia is a buildup of spinal fluid in the spinal cord cavity called a syrinx. The buildup can be due to blockage from a Chiari malformation, spinal trauma, tumor or other causes. This results in stretching and eventual injury to nerve fibers.
“Syringomyelia is most often the result of a Chiari malformation, but can also be caused by spinal cord injury, tumors and other causes, It often goes undiagnosed for so long that the damage is permanent even with surgery,” Poppe added. “Our goal is to educate both the general population and pediatric and primary care physicians about these devastating conditions which can lead to a life of debilitating pain, even death.”
“This disorder had robbed me of persuing a career, previously enjoyed activities, and causes extreme stress on those who love and care for me. It causes me severe chronic pain that has drastically affected my life for over 8 years now. It is a daily struggle to not only handle the pain, but to also live in a society among people that do not understand that I am sick and suffering because I look normal,” said Kelly Whitehead, Smyrna resident and local walk coordinator. “Because there is little information out there and many doctors are unaware of Chiari Malformation, patients can suffer for years without a proper diagnosis. This unite@night walk is in memory of those who lost their battle and all those like me, who are continuing to fight!”