JACKSONVILLE, Fla. -- There is a new walk hitting the streets of Jacksonville; it's for a rare disorder.
Amanda Wendorff, of Orange Park, said she thought she was alone, when just last year her 7-year-old son was diagnosed with Chiari Malformation.
"I didn't know anyone that had it," explains Wendorff when her son was first diagnosed.
Through social media and searches online she found a small group of people on the First Coast also dealing with the challenges of Chiari.
It is a disorder that can affect the brain and spinal cord and causes excruciating headaches.
In an effort to spread awareness about this possibly debilitating disorder she has organized the first ever Conquer Chiari Walk in Jacksonville.
It is a nationwide event that will take place in several states all on the same day.
Preregistration ends August 8th. For information to sign up or to be a corporate sponsor visit www.conquerchiari.org.
First Coast News