Online Mendelian Inheritance in Man - Describes many case reports of FSS (also known as whistling face windmill vane hand syndrome), with references and a summary of the state of knowledge of the genetics. - http://www.ncbi.nlm.nih.gov/entrez/dispomim.cgi?id=193700
National Craniofacial Association - Summarizes the child's likely needs, and has links to other resources. - http://www.faces-cranio.org/Disord/Freeman.htm
Freeman-Sheldon Parent Support Group - Includes a members-only area with a bulletin board and pictures of afflicted children. - http://www.fspsg.org/