As some of you may know, especially if you follow me on facebook, my four-year-old grand daughter has a genetic condition known as Inverted, duplicated and deleted 8P chromosome. This is an incredibly rare condition. In fact, only about eighty people in the entire world have been diagnosed with it. As a result she is afflicted with severe muscle weakness, her cognitive abilities are very limited, and she in unable to talk.
Over the weekend of June 28 - 30, Columbia University in New York held the first ever conference for those who are affected by it. Approximately eighty families attended, each afflicted child having some version of the disorder. The conference is known as Project 8P.
The following link will take you to the webpage for Project 8P. Here you can learn more about this condition and what is gong on with current research.At this time we are trying to increase awareness about this disease among the general population, and also in the medical professional world. Please help us spread the word so more doctors and medical personnel can learn about and help find new therapies, maybe even a cure for future generations of kids.