Date(s) & Time(s)::
June 14, 2014 at 7:30 PM
Location: IPFW Campus
Phone: Melissa R. Hirsch, Chairperson, (260) 348-9504
unite@night will be a one mile casual evening walk to be held on Saturday, June 14th at 7:30 pm (registration at 6 pm) on the campus of IPFW. This walk will bring together people who are suffering with the devastating effects of Chiari malformation (CM), syringomyelia (SM), and related disorders such as Ehlers-Danlos syndrome, hydrocephalus, idiopathic intracranial hypertension, and dysautonomia, to name a few.
**Walkers who raise at least $50 will receive a unite@night t-shirt and light-up foam stick**
In addition, for this years walk, there are opportunities to earn one additional prize. The prizes and levels can be found at www.CSFinfo.org, under unite@night. *You can also register at this web address.
The ongoing battle with CM, SM, and related disorders can translate to a lifetime of chronic pain for over one million Americans who suffer from these disorders. The Chiari & Syringomyelia Foundation, Inc. (CSF) has established the unite@night walks to support local CSF Chapters in their goal to provide education and increase awareness, while funding research projects that can potentially find answers to better the lives of those struggling with these disorders.
Chiari malformation (kee-AR-ee) is a congenital malformation (primary CM) in which the bottom of the brain (cerebellum) is crowded in the skull cavity, forcing the lower tips of the cerebellar hemispheres (tonsils) into the hole in the bottom of the skull (foramen magnum). This causes a blockage of cerebrospinal fluid (CSF) flow from the cranial cavity into the spinal canal. CM may also develop later in life, following a trauma, a mass in the brain, or excessive drainage of spinal fluid from the spine. This is known as acquired, or secondary CM.
Syringomyelia (sear-IN-go-my-EEL-ya) occurs when spinal fluid builds up inside the spinal cord due to blockage from a Chiari malformation, spinal trauma, a tumor, or other causes. As the amount of spinal fluid increases, a cavity is formed in the spinal cord called a syrinx, or syringomyelia, which results in stretching and, over time, permanent injury to nerve fibers.
“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.
“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 as well as pediatric and primary care physicians about these devastating conditions which can lead to a life of debilitating pain, even death.”
The organization also works closely with over 50 medical and research
institutions around the world such as the National Institutes of Health, the Cleveland Clinic, Duke University, UCLA Medical Center, The Chiari Institute, Dell Children’s Hospital, University of Washington, University of Wisconsin
Hospitals, Doctors Community Hospital, and University of Miami School of Medicine, to name only a few.
Further information on Chiari, syringomyelia, and related disorders is available at www.CSFinfo.org.
You can register at: http://csfinfo.org/csf-unite-night/walk-sites/
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