The Road to Philadelphia From Ohio One of the unique blessings of receiving a diagnosis is finding your Tribe. With a disease as rare as PURA, the longing for its name is replaced by the desire to connect with the only people on Earth that know what those four letters mean. Two years ago and again in Philadelphia, I will be blessed to meet the people that I had spent my daughter's whole life looking for. The lonely nights spent awake worrying over my motionless babe. Post af

Dear PURA Friends: I'm glad to be making my first trip to the PURA Conference and event in Philadelphia. This will be a great adventure for my family and I. I'm just adventurous enough to bring all of them along, because we are all in this together. We are a small family, the Spadafores of Tulsa: just the 5 of us here, but we are part of a larger clan: grandparents in Tulsa, in Minnesota, in Florida. My wife and I are taking our 3 kids to Philly to meet the rest of our fami

On the 8th of September 2011, my world changed forever. Never did I expect to have a child with special needs. However, my little Lily decided to be a 1 in 5.295 million baby….. the population of Scotland at the time! Those first few weeks were so stressful. In and out of the Special Care Unit as Glasgow’s Royal Maternity Hospital. Being told Lily was a “sleepy” and “floppy” baby just didn’t ring true for my wife and I. We knew there was something different about Lily. After

Dear parents and families: As President of the Board, I, like the rest of the Board, as well as the medical research community, are deeply interested in your needs and desires. We are all faced with more unanswered questions than we could ever imagine. I share many of them! Our purpose in presenting this years’ conference is to help educate you, us, our parents in the research that is directed at helping our children. Please keep in mind that the PURA Syndrome Global Re