This weekend will be the first ever SJIA Family day. More than 80 people are registered to be there – parents, pediatric rheumatologists from Cincinnati Childrens and anyone else interested in the disease. Children will be there as well and we have a room for them with Child Life helping out.
Our hearts go out to the family of Ethan Cox, a young boy in Cleveland who passed away from SJIA related complications over the holidays. His parents colleagues have organized a memorial fund in his honor, and have given generously. Please contribute if you can. Our mission is to find therapies so that tragedies like this don’t happen.
Rashmi posted a survey on the facebook SJIA group and the Autoinflamatory disease group, to try to understand what medicines patients are using to control their disease. Here’s a map that shows the distribution of patients worldwide (results are still coming in so this will change over time).