Spotlights

Meet Mary Kate

Mary Kate is a sweet and sassy 4 year old! She has a love for swimming, swinging, chicken nuggets, honey mustard, and her grandma! She is about to start her third year of preschool, and…

Meet Ford

Ford has piercing blue eyes and a wild mop of curly hair, so blonde it looks white. It reminds me a lot of Doc's hair in Back to the Future. I've never cut his hair…

Meet Emma

Emma was a medical mystery for almost 8 years. Appointment after appointment, yielded very little answers. MRI's came back normal. When she was 3 we met with genetics and the geneticist basically looked at us…

Join the Fight

There's a way for everyone to get involved, whether you're a family member, friend, researcher, healthcare provider or other supporter.