The Chiari & Syringomyelia Foundation (CSF), a national non-profit organization committed to finding a cure for various debilitating neurological disorders, announced today plans for the unite@night walk in Boca Raton.
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Unite@night will be a one-mile casual evening walk being held on Friday, June 14, 2013 at Patch Reef Park, Pavilion 3 – 2000 Yamato Road in Boca Raton. Registration will begin from 6:00 – 7:30 p.m. with the walk beginning at 7:30 p.m.
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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.
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 and Co-ops 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 Dorothy Poppe, CSF Executive Director.
Those interested can register at https://[email protected]/bocaraton/. Anyone who raises $50 will receive an illuminated balloon, a unite@night t-shirt and a gift from the Foundation.
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 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 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, South Florida resident and local walk coordinator. "Because there is little information out there and many doctor's 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!"
CSF also works closely with prestigious medical and research institutions such as The Cleveland Clinic, National Institute of Health, Johns Hopkins University, Duke University, UCLA Medical Center, The Chiari Institute, Dell Children's Hospital, University of Washington, University of Wisconsin Hospitals, University of Iowa College of Medicine and University of Miami School of Medicine.
Further information is available on Chiari, syringomyelia, and related disorders at www.csfinfo.org.
Media contact: Cathy Poznik Chiari & Syringomyelia Foundation (330) 998-6195 [email protected]
Local contact: Alyson Benison (954) 817-6351 [email protected]
SOURCE Chiari & Syringomyelia Foundation
