The Caudal Regression Syndrome Association

Caudal Regression Syndrome, Lumbo Sacral Agenesis is a rare physical condition sometimes resulting in the absence of a large portion of the spine and small lower extremeties. Most doctors have never seen patients with this condition, and people who have this condition have rarely met anyone else similar. Parents have nowhere to turn when they learn of their child's diagnosis. I was born with this condition, and decided to create an association so that we could all come together. I established the Caudal Regression Syndrome Association. I put up a website, and started a facebook site. Now we have more than 200 members from all around the world. Many new parents, some mothers who have found their child will have this condition before their child is born, join our site to talk with other parents. It has become a resource of information and support. When I travel for sports (I am a paralympic athlete) I host meets ups in any of the states or countries I travel to, so that we can meet one another. My organization provides social support, education, and information, and it also exposes parents to the idea that their children can become successful in many ways, regardless of their physical disability. https://sites.google.com/site/caudalregressionsyndrome/