Meet Kathy, SWSC's new Volunteer Representative

WELCOME TO
THE STURGE-WEBER SYNDROME COMMUNITY

A worldwide community for individuals and families living with Sturge-Weber Syndrome

This site is dedicated to the adults and children living with SWS, and their families and friends.

Each case of SWS is unique to the individual. The needs of a patient can vary greatly, depending on the symptoms and their severity.

We hope the information provided on this site will prove beneficial to those seeking help and answers about SWS.

Please contact the SWSC if you need further help or information, or if you have any suggestions or comments.

VBF Launches 2010 DOA - We need 25 families

Thank you for your support of VBF and the VBF International Day of Awareness.

Many of you have participated every year, since its inception on May 15, 2004. Families and individuals have hosted annual bake sales; garage sales; sold stickers, bears and bracelets; celebrated a birthday by hosting a party for VBF; were featured in newspaper and magazine articles and local television news programs – the list goes on…

There is really no proper way to thank each and every one of you for support, and for raising awareness of vascular birthmarks and the associated syndromes and conditions. VBF has one amazing support network.

As you know, the downturn in the US economy has had an impact on all aspects of life, including charitable giving. Donations to VBF are down 40 percent, while the free services VBF provides to patients and families have continued to increase. For this reason, your continued support of Day of Awareness is more vital than ever.

If you haven’t participated in VBF Day of Awareness, please join the VBF family of tradition and giving by hosting an event in your community: http://www.birthmark.org/awareness

Children with birthmarks have met this challenge by becoming active participants in raising awareness. Saige Cavayero, now in college, serves on the VBF Board and designed and sold bracelets for Day of Awareness. Saige also designed a poster to highlight the 2010 awareness campaign.

Elizabeth Peters sold stickers for a “Wall of Fame”, Gabriella Gomillion donated her own toys to sell and raise funds, Laura and Heather Toulson hosted a lemonade stand, Evan Ducker wrote a book that launched the “Buddy Booby’s Birthmark International Read-Along”, and Owen Dreger hosted a read-along at his school: complete with a play performed by a class at his grandmother’s school.

VBF President and Founder, Dr. Linda Rozell-Shannon, along with VBF Executive Assistant Basia Joyce, VBF Office Manager Lauren Palmateer and VBF Board member Lianne Chase, are organizing the second annual VBF 5K Run/Walk in New York. VBF Board members Danielle Vlahos and Rose Shea will host a walk/run in Boston. VBF Board member and wife of VBF Expert Dr. Stuart Nelson, Peggy Nelson, is hosting a wine tasting event in California along with Peter Zellner and Lauri Firstenberg.

Annual awareness participants include: VBF Board members Brian and Natalie Bolinger, hosts of the Texas Hold ‘Em and Auction; Jan and Andrew Dreger (Owen’s parents) host Campbell’s Boat House for VBF at their family restaurant; Robin Houwman sells pendants to raise funds for VBF and other birthmark organizations.
VBF would also like to acknowledge the support of members like Jill and Paul Brown whose daughter Aslynn underwent surgery for a massive hemangioma, and VBF Honorary Chairs Frank and Barbara Catalanotto whose daughter Morgan had a hemangioma. Like so many parents of children with birthmarks, their efforts on behalf of VBF are outstanding.

It’s never too early to plan your event! Visit the VBF Day of Awareness website today to register your event, or for ideas on how you can help. Here are some helpful links to get you started:

· VBF Day of Awareness website: http://www.birthmark.org/awareness
· Register your event and Shop VBF to order materials, all in one easy step: https://birthmark.org/secure/shopdoa.php
· “Tell Your Story”. Share your experiences with other families: http://www.birthmark.org/awareness/story.php

Remember, May 15 is Day of Awareness, but events can be held any time during the year.

THANK YOU VBF FAMILIES AND FRIENDS!

Bags for Birthmarks

You can help to “Sponsor A Family” so that they can attend the VBF annual medical conference and receive a treatment plan. Donate a new or gently used high-end, vintage, or designer handbag or bid on one at www.birthmark.org. Both ways help! Tell your family, friends, or colleagues that they can help too by donating or bidding on a handbag

To donate a bag, click here, fill out the form, and mail it to us.

To get a bag, click here.

New Research

Use of the Atkins diet for children with Sturge-Weber Syndrome

Always seek the advice of a physician or other medical professional for diagnosis and treatment. The SWSC and/or VBF are not responsible for the content or accuracy of any information, advice or links on the site.

The SWSC is a branch of the Vascular Birthmarks Foundation. VBF is a fully approved not-for-profit. Your donations are tax deductible.
Federal Tax ID 16-1515227