This Saturday Marian and I are flying to Maryland to attend the Patient Focused Drug Development Meeting for Niemann-Pick Type C. I,...

We have some exciting developments! These months have been a whirlwind. We are seeing so many incredible things and Marian teetering on...

On our way to Chicago for her 12 month assessment. When I was little I was pretty sure I’d be on tv one day. My cousin Gina and I used to...