Conquer Chiari walk on Saturday, Sept. 20, helps raise awareness about Arnold-Chiari malformation

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Sitka will host its second Conquer Chiari walk on Saturday, Sept. 20, to help raise awareness about a neurological disorder called Arnold-Chiari malformation. Registration for the walk starts at 11:30 a.m. and the one-mile walk is at noon at the Moller Field Track.

joejanechiariArnold-Chiari malformation, or Chiari, is a serious neurological disorder that affects about 300,000 people in the United States. In order to raise research money and awareness about the disorder, they created the Conquer Chiari Walk Across America, a series of Conquer Chiari walks takes place in several communities around the country on Sept. 20. September is National Chiari Awareness Month, and last year’s Conquer Chiari walk in Sitka was believed to be the first event in Alaska.

A personal connection to Chiari is why Hillary Martin organized this event. “My sister, Sarah Martin, was diagnosed with this illness in the spring of 2012,” she said. “Sarah was living with a 25-millimeter Chiari malformation, one of the largest ones the doctor had seen in his career. She needed a brain decompression surgery to stop her suffering. The surgery was performed on Jan. 15 (2013), and it was an amazing improvement to Sarah’s life. Sarah will still live with  permanent damages that were caused by Chiari, but she is becoming stronger and happier every day.”

Chiari is a serious neurological disorder where the bottom part of the brain, the cerebellum, descends out of the skull and crowds the spinal cord, putting pressure on both the brain and spine and causing many symptoms, according to the Conquer Chiari website.

Chiari has a diverse and wide-ranging set of symptoms, and 95 percent of patients with Chiari experience at least five of them. The symptoms include severe headaches brought on by coughing or sneezing, extreme pain in the neck and shoulders, trouble swallowing and sometimes speaking, respiratory problems and sleep apnea, loss of bladder and bowel control, loss of fine motor control, balance problems, numbness in the hands and feet, the inability to feel hot and cold, and weakness, stiffness and pain in the arms and legs. In severe cases, patients can experience paralysis.

Participation in the walk is free, and people who donated more than $26 before Aug. 15 will receive a t-shirt. To learn more about the event, contact Hillary Martin at 738-0314 or hillary@cityofsitka.com.

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