Hello, my name is Aaron Semler, I am semi-new to this website my daughter Allyson is almost 4 years old and has Moya Moya she was diagnosed at age 6 months and underwent surgery by dr. Michael Scott at Boston Childrens in March of 2006 when she was almost a year old. now she is still recovering at age 4 having many seizures and other minor medical problems that make each and every day an adventure for our family. however I recently left my job inorder to stay home and care for my daughter taking her to therapy's and attempting to assist in the control of her siezures. i have a lot going on just watching her however i want to help. i know what my wife and family went through when our daughter was diagnosed and then with the surgery the stress and the strain of the medically unknown and the bills. i have been attempting to speak with many organizations in our immediate area trying to hold fundrasers or bonnanza's or just anything to raise money for family's that are effected by moya moya. so far i am having no luck no one is familiar with the diesease and are sceptical when asked to help. i want to set up and organization or fund or something to help. so that other families do not have to loose what the have worked for over so many years like we did, it is hard enought just dealing with the diagnosis and then not knowing what the future holds. if anyone can give me any guidance as to who i can contact or any other suggestions please feel free to contact me email Bstnfn82@aol.com thank you for your time and i hope that this will help me get things rolling and help some one out as soon as possible.