Sturge-Weber Foundation (SWF)
PO Box 418
Mt. Freedom, New Jersey, USA 07970
Fax: (973) 895-4846
The Sturge-Weber Foundation is a clearinghouse for information concerning Sturge-Weber Syndrome, Klippel Trenaunay, and Port Wine Stain Birthmarks. The Foundation provides support for parents and individuals with all three syndromes, educates the general public, medical profession, and government agencies, and funds research. The Foundation has local support groups and a directory in the form of area representatives and international resource contacts. They will assist individuals who wish to start a local chapter in their area and will provide parent-to-parent matching after receiving a signed permission form.
The Sturge-Weber Foundation publishes a quarterly newsletter, Branching Out, that is includes with membership fees, and has many articles, brochures and publications available including "SWS-A Kids Booklet," "Color Me Different-Color Me The Same," "Branching Out With Wisdom," a book of helpful hints from parents & grandparents, and a video "SWS-An Overview for Physicians and Families."
The Sturge-Weber Foundation offers a new parent packet that includes a copy of the newsletter, a pamphlet explaining Sturge-Weber Syndrome, a questionnaire, and a letter from the president of the Foundation. The Foundation collects information on physicians and researchers who treat/study the syndrome and make this information accessible to members. They provide information and referrals to other resources and mail packets to schools, hospitals, and clinics. The Sturge-Weber Foundation hosts a national conference; call for further information.