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Some of the benefits and services that are available:
Web site access Although anyone can access www.sturge-weber.org, only registered members can obtain a username and password that allows them to download articles, read past issues of the newsletter, find specialized centers near them. Make sure you sign up for one.
The Sturge-Weber Foundation website provides basic information about Sturge-Weber Syndrome, Klippel-Trenaunay and Port Wine Birthmarks. It is not intended to, nor does it constitute medical or other advice. Readers are warned not to take any action with regard to medical treatment without first consulting a physician. The SWF does not promote or recommend any treatment, therapy, institution or health care plan.
Branching Out This three times per year newsletter/magazine is sent to all families, relatives and friends who have registered with us. It has the latest news and photos on happenings, educational articles on aspects of SWS/PWS/KT that will inform your judgment, profiles of members and first person essays. E-news is sent monthly to all members who have given us their email address. The E-news has current news and contact information that can’t wait for Branching Out.
Support Forums through Yahoo Groups. This is a way for any member to be in contact with hundreds of other members and be able to ask questions, make friendly contact with families in their local area or around the world. There are two groups, choose which best suits your needs:
Find a Doctor or healtchare professional. Members can call the SWF office to obtain contact information for a specialist convenient to their geographic area who has experience in, or is knowledgeable about, SWS/PWS/KT. Contact us to locate a specialist.
Find a Family. Whether you are facing a new diagnosis, or are faced with new issues or concerns, The Sturge-Weber Foundation (The SWF) wants you to know support can be just one phone call away. Join us to be connected. Many individuals and parents/caregivers whose lives have been affected by SWS, KT and PWS are waiting to connect with you. These volunteers are available to speak to you about their personal experiences, resources, information, and offer you support. The volunteers will not provide you with recommendations for medical treatment or give you medical advice, but they will share their first hand experiences with you about different types of treatment options available, helpful therapies, professionals and community resources. Materials and publications Informational brochures, Awareness posters, Kids Guide, Emergency Room Guide, Check It Out cards (business cards with a capsule definition and web address). A supply of these materials are available to any member who wants to spread awareness.
Special Event Invitations When there are SWF Family Days or Regional Conferences planned, members are the first to be invited. Members are encouraged to lend a hand in the planning of events.
Call us Anytime When you call the SWF office during weekday business hours, you will speak with a person who cares. When the office is closed, reliable voicemail will record your question or message and a staff member will reply at the earliest opportunity. 800 627-5482 or 973 895-4445.
Why your information is needed: When people make themselves known to us we can document the incidence of SWS/PWS/KT. The SWF receives no US Census figures and no reports from other governmental sources. Your personal information is confidential. Only the numbers are counted. With this information, we can advocate for increased services and research. Our figures are only part of the whole international data pool. But each additional piece of the puzzle is valuable.
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Take an active role in your self-care. Membership provides the practical information and useful services you need to be an engaged and educated healthcare consumer. When you join, you will receive benefits and services to complement and expand your knowledge.
