News and Events

SWSCC NEWS

• SWSC Announces Volunteer State Representatives – Meet our new SWSC Volunteer State/International Representatives, all of whom are adults living with SWS.
• Visit “Michelle’s Poetry Corner” – Read poetry by Michelle Mora, SWSC Volunteer Rep for Louisiana. These poems offer an insight into growing up with a facial PWS.
• Join us for Chat Night in the SWSC Chat Room. Chat times will be posted to the Support Groups and on the SWSC Discussion Board. Register online at the “Group Login” link.
• What if the SWS Community earned a penny every time you searched the Internet? Now it can! GoodSearch.com is a new Yahoo-powered search engine, with a unique social mission... every time you use GoodSearch; money is generated to support the mission of VBF. Just go to www.goodsearch.com and be sure to enter the Vascular Birthmarks Foundation (we are a branch of VBF) as the charity you want to support. The more people who use this site, the more money we'll earn so please spread the word! Go to http://www.goodsearch.com
• Kids – Join Glen’s Gang, a newsletter and pen pal group for kids with birthmarks and their siblings. http://swscommunity.org/glensgang.php
• Canada Shines Through the Eyes of a Teenager on the Verge of Blindness in “Tabitha's Journey”, a CTV Original Documentary. “Tabitha's Journey” follows the emotional cross-Canada journey of 18-year-old New Brunswick teenager Tabitha Dunphy and her father Steve, who gives up everything to fulfill his daughter's wish to take an odyssey across the country before she loses her sight. http://www.tabithasjourney.ca

VBF NEWS

• Don’t forget to plan your 2008 VBF International Day of Awareness event. The official date is May 15, but events can be held at any time during the year. To learn more, visit the VBF website: http://birthmark.org/doa.php
• Join the Buddy Booby Read-Along for VBF Awareness. For registration information visit the Buddy Booby website: http://buddyboobysbirthmark.com/_wsn/page5.html
• 2007 VBF Conference - The Vascular Birthmarks Foundation, Dr. J. Stuart Nelson and the Beckman Laser Institute (BLI) hosted the 2007 Port Wine Stain and Vascular Birthmarks Conference on Friday, November 2nd and Saturday November 3rd. The conference will took place at the Beckman Laser Institute in Irvine, California and at The Island Hotel minutes away in Newport Beach. The theme was “Research Holds the Key” and important research findings were presented by the leading physicians in the field of vascular birthmarks. For more information on the conference and presentations, visit the VBF website. http://birthmark.org/2007conference.php

RESEARCH UPDATE

Use of the Atkins diet for children with Sturge-Weber Syndrome
Principal Investigator: Eric Kossoff, MD
You are invited to join a study enrolling children ages 2-18, with proven Sturge-Weber syndrome on an MRI, for a study of the Hopkins modified Atkins diet for treating intractable seizures. Children must have at least one seizure every month and have tried at least 2 anticonvulsant medications to enroll. The study involves 3 visits to Johns Hopkins over 6 months, which must be covered by the parent or insurance. Blood and urine studies will be obtained at the first and last visits. For more information, contact Dr. Eric Kossoff at 410-614-6054 or ekossoff@jhmi.edu