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Fundraiser hopes to raise awareness of rare disease

4/20/2013

By DAWNE LEIKER

dleiker@dailynews.net

ST. FRANCIS -- The Kansas Walk, Run & Rock for an RSD/CRPS Cure, set for Saturday in St. Francis, is hoped by organizers to raise awareness of a rare nervous system disease and to build a network of support for those who suffer from it.

Reflex sympathetic dystrophy is a term used to describe one form of complex regional pain syndrome. Both RSD and CRPS are nerve disorders characterized by chronic severe burning pain, changes in bone and skin, excessive sweating, tissue swelling and sensitivity to touch.

"I'm hoping for a network, support group for people that do have it and raising awareness so people know what we deal with every day," said Joe Caldart, St. Francis organizer of the event who was diagnosed with the disease 15 years ago.

The day's activities will begin at 8 a.m. with an 8K and 2K walk and run from Wheeler to the Cheyenne County Fairgrounds. At 9 a.m., there will be a 1-mile fun run for kids, followed at noon by vendors at the fairgrounds.

Center stage events throughout the afternoon and evening include bands from Kansas, Nebraska and California at the Cheyenne County Fairgrounds. Intermittently, speakers will educate audience-members regarding RSD/CRPS.

Caldart said RSD/CRPS changed his life through the limits it imposed on him.

"I'd been a plumber for a very long time and physically, I can't do it anymore," he said. "So my whole career as a master plumber was gone."

It was a two-month process of testing before Caldart was diagnosed with the disease. Through time, he has found his own methods for coping with RSD/CRPS.

"After 15 years, unless it's a really bad flare-up, I just deal with it on my own," he said. "I have a pain management (process) I've been doing for a long time."

"You just have to take it one day at a time, because every day is different."

Bands performing Saturday include 9ine Foot Squirrel, a band comprised of Caldart and his sons, St. Francis; Phil Crawford, St. Francis; My Starving Lion, McCook, Neb.; Homemade Crazy and A Life Led Lucid, both from Kearney, Neb.; Shantel Leitner, Atwood; Fresh Picked Parsley, Garden City; and Keli Raven, Los Angeles.

More information is available at www.kansasrsdawareness.org or www.facebook.com/events/391498447590329.

Admission to performances will be a freewill donation. Registration for the walk or run is $30. All proceeds will go to the Reflex Sympathetic Dystrophy Association.