Sorry it has been so long since my last update... just got back from my first Joubert Syndrome Foundation conference in Cincinnati and wow! I have never been so inspired and comforted. It was amazing to be in a room full of people that truly know what you are going through! I have never felt such unconditional love and acceptance. Both Tilly and I made some amazing new friends who will be with us for the rest of our lives. I am physically and emotionally wiped out but I promise I will post more including great info I learned and some photos! Until then, take care!