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Syringomyelia

July 28, 2017 - 8:30am

A local [email protected] fundraising walk will be held tomorrow Saturday, July 29th with registration starting at 6:00 p.m and a 1 mile casual evening walk starting at 7:30 p.m. at the Kiwanis Park on West Main Street Road in Batavia.  There will be a Silent Auction and more than 100 items/baskets that will be raffled off.  

Rachel Fisher, local [email protected] walk chairperson explains why she organizes this event.  “My daughter Maire, who is 5 years old, was diagnosed with a Chiari malformation and syringomyelia in 2014 and hydrocephalus in 2017.  In December 2014 Maire underwent a 6-hour brain surgery to help reduce the effects of the Chiari malformation and syringomyelia.  Surgery is not a cure and she will have annual neurosurgical appointments for the rest of her life.  Each day brings a new challenge as these conditions affect how her body responds to things like the weather, noises, light, and physical activities. 

My daughter and our family would really appreciate your support as we strive to find answers for individuals living with these disorders.  The goal is to help them live better, more pain-free days while raising awareness throughout the medical and lay communities.”

This walk is one of many around the country that will provide awareness, support, and important funding for the education and research programs of the Chiari & Syringomyelia Foundation (CSF).  Chiari (kee-AR-ee) is a malformation in which the back compartment of the skull is too small, causing the lower part of the brain to hang down into the spinal canal, which prevents cerebrospinal fluid from flowing properly, causing a wide range of symptoms. Syringomyelia (sear-IN-go-my-EEL-ya) occurs when a cavity, or “syrinx”, is formed inside the spinal cord from fluid build-up. A syrinx may injure nerves, causing pain that is hard to manage medically.

Currently, the only treatment for Chiari and Syringomyelia is highly invasive and expensive surgery. There is no cure.

If you want more information or to register, visit: http://unitenight.kintera.org/Batavia  You can also contact Rachel directly at [email protected] or 585-300-3159.

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