Below is an excerpt from the dedication of the manuals. Bring these manuals with you to your Dr. appointments, share them with your medical teams. Please come back and comment if you feel something is missing. We are currently working on Edition 2 of the Manuals with updated research. Dedication from the 2021 CS Manuals: To all of the parents around the world who have walked this path daily, shedding light and working so feverishly to get information as well as support and
