Sturge-Weber Foundation

An informative resource from the foundation is Sturge-Weber Syndrome (ISBN 0-97604840-0).

Karen Ball
P.O. Box 418, Mount Freedom, NJ 07970
(800) 627-5482

Hemangioma Hope
A prayer network. 

Cindy Dougan, North East, PA
(814) 898-1054

Vascular Birthmark Foundation
Newsletter, meetings, etc.

Linda Shannon, Director
P.O. Box 106, Latham, NY 12110
(877) 823-4646

AVM Arteriovenous Malformation - Funny Face
Deborah Breslow is a parent whose son has AVM, a difficult condition to diagnose and treat. This book, with its lovely illustrations, tells the story of the family's medical and social adventures from a parent and child perspective. We came away from the book with a clear understanding of the complexities of parenting a child with this facial anomaly and with an understanding of this rare syndrome. We caution parents to read the book before they read it to their child due to details that may give unwanted stress to the child. We welcome this informative booklet and Deborah as a resource.

FunnyFace, Wycoff, NJ 

Gianna's Wild Strawberry
A children's story about hemangioma birthmarks. By Dana Roberson Guerra, illustrated by Molly Troxell. The complete story is on the web site, but the illustrations and book would make a great gift. It is a true story and full of how one family copes.

Publisher: Bridge Press, 1998

Growing Up With A Facial Hemangioma: 
Parent and Child Coping & Adaptation

Pediatrics (pg.446, Vol.101, No.3, March 1998)

Hemangioma and Vascular Malformation
Free to parents. Published by AboutFace and Cleft Palate Foundation. Contact the Cleft Palate Foundation for ordering information.

NOVA — National Organization of Vascular Anomalies
For 10 years this support network (formally Hemangioma Newsline) has been working with adults and children around the issues of living with hemangiomas and vascular malformations.

P.O. Box 0358, Findlay, OH 45839-0358
(419) 425-1593

"What's Wrong with Courtney?"
Story of parents whose 12-year-old daughter, Courtney, was born with Sturge-Weber Syndrome. Ladies Home Journal (Aug 1993, pg. 22-26) at your library.