My name is Deborah. I am the creator of the 5K or 1M Flamin’ Fun Run. When I was sophomore my life took a very different turn. Instead of learning to drive and sweet sixteen parties, I was diagnosed with Reflex Sympathetic Dystrophy (RSD), now Complex Regional Pain Syndrome (CRPS) exactly one month before my sixteenth birthday. My life became going to doctor appointments, physical therapy, and doing various treatments in hopes of easing the pain.
I learned at diagnosis that RSD/CRPS is a rare disease, which causes lots of pain, and there is no cure. I have severe pain and weakness which limits my ability to walk and I use a wheelchair.
I try to stay strong amid the struggles of chronic health conditions. I volunteered the last three summers at Pediatric Pain Camp. It helps me to meet the kids and beat mine and their isolation caused by RSD.
There was someone else in my community with RSD. My cousin’s husband Rusty. Rusty was diagnosed with RSD in the early nineties. He lost his right hand and part of his arm due to a farm accident. After the trauma he got RSD in the remaining portion of his right arm. We had conversations and shared the struggle of living with RSD, about how people don’t understand about the pain. Rusty would talk about how people did not get that even simple pats on the back at church could give him pain. I started this project thinking I would plan it with Rusty. Rusty passed from this life on June 23. Now I dedicate this Flamin’ Run in memory of Rusty.
The idea for the 5K to raise awareness and money came from my sister. All proceeds will go to RSDSA, a non-profit whose mission is to support CRPS community with education and to drive research for better treatments and a cure.
- Date: Saturday, October 26, 2019
- Start: 8:00 a.m. to 12:00 p.m. noon
- Where: Old Mill Park, Riverside Dr. West Liberty, KY
- Online Registration: $20/Adult, $15/Children (ages 5-17) – Day of Registration: $25/Adult, $20/Children (ages 5-17)
- Event Flyer
- Register Now!
- Contact: Deborah Robbins, by email email@example.com or call 606.743.3825 or Amy Donathan, 606.495.6196, Jessica Peak, 606.725.5629
Participants can choose to do the 5K or 1 Mile. All participants will receive an event t-shirt, a free drink and a goody bag.
For those who are not able to run, but want to support my event there will be informational tables, a bake sale, and other activities to entertain. A limited number of T-shirts will be available for purchase the day of the event.