News
and Events
SWSC 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
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