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The Sturge-Weber Foundation'(SWF) international mission is to improve the quality of life and care for people with Sturge-Weber syndrome and associated Port Wine Birthmark condtions. We support them with collabroative education and advocacy in tandem with translational research as we promote effective management and awareness.
Imagine holding your infant and being told half his brain will need to be removed. Imagine being tired from walking with an enlarged limb, living with aching pain for your entire life. Imagine buying two pairs of shoes because one foot is too large. Imagine comforting your crying teenager as she tells you of an ignorant public who laughed at her. These are just some of the realities of living with medical conditions known as Sturge-Weber Syndrome (SWS), Klippel-Trenaunay (KT), and Port Wine Stain (PWS). The hallmark of these conditions are blood vessels gone awry. A large facial port wine stain including the eye region and varying degrees of glaucoma, seizure disorder and development delay characterize Sturge-Weber Syndrome. In the most severe form, mental retardation and blindness may occur. Sometimes half the brain needs to be removed to stop seizures. Left untreated, the birthmark will thicken causing the face to become misshapen. Klippel-Trenaunay typically has a port wine stain on the body and limbs that goes deep into the tissue affecting soft muscle tissue and bone. Throbbing pain, misshapen heavy limbs and poor circulation are the daily issues of life for these individuals. The two conditions often co-exist. Although not well known, one million individuals in the United States have a port wine stain birthmark. Approximately, 15% of these people have SWS and, to a lesser degree, KT. Until a few years ago, little was known about these conditions and what caused the vascular malformation to develop. Today, there is a great deal of hope thanks to the tenacity of The Sturge-Weber Foundation (SWF). The SWF was founded in 1987 by a mother seeking to answer questions that few could readily solve. The Foundation educates the public and partnership (individuals and families registered through our website) on port wine stain birthmarks and the brain and eye complications that can arise from these vascular malformations. SWF offers referral services and hope to parents. The Foundation facilitates support by networking families and individuals with SWS, KT and PWS. Professionals receive the latest data and consensus treatment protocols on these conditions. This referral network is a vital component to increasing the understanding of SWS and KT and to collaborating with experts to treat the conditions. The SWF promotes and funds scientific research on neurological, ophthalmological and vascular anomalies with an emphasis on SWS and KT. It also participates in coalitions of similar disorders to continue government support of research and worthy clinical trials. The Sturge-Weber Foundation is the leading organization in the USA dedicated to supporting families coping with these medical conditions and to fostering research into vascular birthmarks.
- Bonnie Ayers
- 973-895-4445 x 106
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