Sam's disease has an official awareness ribbon! About the design: An old medical saying is “If you hear hoof-beats, think "horse." This means, that the most likely explanation is often the right one. But rare diseases are the zebras of medicine, a point that medicine and the public needs to grasp. The National Disease Day organization in the US has promoted the use of zebra stripes and this feature of our ribbon connects the FD/MAS community to patients, caregivers and advocates for the other rare diseases who struggle along-side us. Zebra stripes can be any two colors. White is symbolic of bone disease. Orange features prominently in the logos of the Fibrous Dysplasia Foundation, National Organization for Rare Disorders and other international organizations working to promote the welfare of FD and MAS patients. Purple references chronic pain, an invisible feature of FD that needs attention among medical personnel and the broader community. Yellow is symbolic of optimism and hope. This is what motivates patients to persist in their efforts to live full lives and motivates patients, caregivers, medical professionals and supporters to bring attention to and work for a cure for the rare diseases of FD and MAS.

You can see more about it at http://www.fibrousdysplasia.org/index.php?page=6 

School has started. We had a meeting with 9 adults to make sure everything was set for Sam to go back to school. That they knew what he could and could not, or more accurately was not supposed to do. One thing they asked me to do was make something to show the other first graders what was going on with Sam and how to best play with him. I did this power point presentation for this. There is no sound for this and it goes kind of fast for reading some of the slides, sorry.Use the pause button.  One of these days I'll make a full fledge presentation set to music.