News and Media Support
Raising Awareness For CRPS Kidz
Posted by admin on Jun 26, 2013
Sandy Boone, Freelance Advocacy Journalist
Griffin Winn is 16 and has CRPS/RSD, Patella Femoral Syndrome & POTS since 9/20/2011. (CRPS stands for Complex Regional Pain Syndrome and RSD stands for Reflexive Sympathetic Disorder. They represent a Neuromuscular disease that affects the skin, muscles, joints & bones; his pain signals are misfiring & they tell his body that it is in 24/7 pain – higher than that of cancer or childbirth; CRPS involves the internal organs which result in sleep paralysis; hypersensitivity to medications, sounds, smells, & sunlight). His goal is to continue walking without support, keep the strength up in the leg to avoid atrophy & to manage his pain without medicine. Surgery is out of the question unless it’s a life or death situation – until a cure is found (surgery could cause the disease could spread to the other limbs.
The Courier-Times
October 27, 2012
by Grey Pentacost
CRPS Kidz is dedicated to helping kids with CRPS by my commitment to share my journey. My wish is to increase awareness and to be a source for other kids.
Go to link
CRPS Kidz is dedicated to helping kids with CRPS by my commitment to share my journey. My wish is to increase awareness and to be a source for other kids.
Go to link
CRPS Kidz is dedicated to helping kids with CRPS by my commitment to share my journey. My wish is to increase awareness and to be a source for other kids.
Go to link
CRPS Kidz is dedicated to helping kids with CRPS by my commitment to share my journey. My wish is to increase awareness and to be a source for other kids.
Go to link
The Sussy Project
August 13, 2013
by Meggie
August 13, 2013 in Uncategorized by Meggie
When I first read Griffin’s story, I thought about my unborn son (he’ll be arriving in a few short weeks). If my son turns out like Griffin, I safely can say I’ve done something right. He has amazing courage, an encouraging spirit, and a gigantic heart. But don’t just take my word for it – here is what Griffin’s mom (Sandy) told us about Griffin:
“Griffin has always been intelligent as a child. He earned his Arrow of Light in Cub Scouts. I was the Cub Master and every week he would help me prepare the Monday lessons for the entire pack. He won an Art Award which was displayed at the local Kirby Theater Gallery & earned...
Projects
Projects
Why Did This Happen To Me And How I Got RSD
Pamela J. Tomlinson, Author
Video Production by Griffin @ www.crpskidz.com
Susan Smith March 2012
This year, Tomlinson was diagnosed with Reflex Sympathetic Dystrophy Syndrome, also called RSD. RSD is a nerve disorder that can affect a person’s ability to move easily. In the middle of the night, Tomlinson will feel a spasm in her leg and be unable to sleep. Before her diagnosis, Tomlinson and her husband were active kayakers. Her hobby was outdoor photography, which allowed her to captured the wildlife surrounding her waterfront home on film. She said she is unable to move easily now, but wanted to remain active somehow. Writing her books helps her do that.
There Is A Bully In The Jungle
Pamela J. Tomlinson, Author
Video Production by Griffin @ www.crpskidz.com
Susan Smith March 2012
"There is a Bully in the Jungle" is about a mean monkey bullying all the animals in the jungle. The animals must all come to together to banish the mean monkey from the jungle. This book was written to help all the children and adults out there that may have or still is being bullied by someone. This book is dedicated to you. To the bullies out there that are doing the bullying, you may think you are having fun at some ones expense, but you are causing someone a lifetime of pain. This is something your victims never get over.
