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CSF to hold fundraising unite@nite walk in Boca Raton
By Palm Beach Business.com
BOCA RATON — The Chiari & Syringomyelia Foundation, a national nonprofit organization committed to finding a cure for various debilitating neurological disorders, announced today plans for the unite@night walk in Boca Raton.
Unite@night will be a one-mile casual evening walk being held on Saturday, June 9, at 6 p.m at Patch Reef Park, Pavilion 4 – 2000 Yamato Road in Boca Raton. The walk, part of a 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.
Battling 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 complex 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 at any age," said CSF Executive Director Dorothy Poppe said.
Those interested can register at the foundation website. Anyone who raises $25 will receive an illuminated balloon and those who raise $50 or more will receive a unite@night t-shirt and an illuminated balloon.
The Chiari I malformation is a congenital malformation in which the back compartment of the skull is formed too small, resulting in crowding of 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 the buildup of spinal fluid in a spinal cord cavity called a syrinx. The buildup and blockage can be caused by 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 disease has robbed me of my career, previously enjoyed activities, and causes extreme stress on all those who love and care for me," said Alyson Benison, a South Florida 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. Unite@night walk is in memory of all those who lost their battle and all those like me, who are continuing to fight!"
