Hi, I'm Amy- Lucas, Lara and Leyton's mom. I am also the president of NICS- National Initiative for Cockayne Syndrome soon to be doing business as Cockayne Syndrome Foundation. We are so very blessed to have been interviewed by Chris from Special Books by Special Kids. Spreading joy, love, Cockayne Syndrome awareness and our love of life are our families mission.

Being a mom of two children with an ultra rare disease has so many faces- but today we ask for your help with raising funds to support NICS so that NICS can continue to support CS/TTD families thru medical education to support early diagnosis and treatment, provide available resources, support research and advocate to ensure every child experiences life to the fullest. Will you join me?