- 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
- 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
- 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
- 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.
Vascular Birthmarks Foundation to Host
“Mark of Beauty” Gala, Conference AND AUCTION
- Organization Works to Increase Awareness & Support of
Serious and Misunderstood Anomaly -
New York -- October 17, 2008 -- The Vascular Birthmarks Foundation
(VBF) will be hosting its “Mark of Beauty” Gala and
2008 Vascular Birthmarks Conference on November 14-15, 2008, in
VBF is an organization dedicated to helping children and families
affected by birthmarks, tumors, and syndromes receive proper diagnosis
and treatment. Dr. Linda Rozell-Shannon founded VBF after her daughter
was born with a hemangioma on her lower lip and she was unable to
find information on treatment options.
According to Dr. Rozell-Shannon, vascular birthmarks are a largely
unreported medical phenomenon that affects one in ten children born
annually; with approximately 40,000 being so significant that they
require the opinion of a specialist. Since insurance companies frequently
deny treatment and because there are so few treatment centers or
specialists, many children are left with a severe deformity, breathing
difficulties, eating issues, blindness and, in some cases, death.
“During initial diagnosis, 90-95 percent of doctors will
say that nothing can be done,” says Dr. Rozell-Shannon. (Shannon
earned her PhD in order to help families affected by these lesions.)
“There is an urgent need to raise awareness in parents, as
well as doctors, that there are critical treatment options available.”
Concerned parents will have an opportunity to have their children
examined and diagnosed at the 2008 Vascular Birthmarks Conference
on November 15, beginning at 8:30 a.m. This program, which will
take place in conjunction with the Vascular Birthmark Institute
at Roosevelt, at Beth Israel’s Phillips Ambulatory Care Center
branch (10 Union Square East in Manhattan), will also include lectures
by the top specialists in the country on the latest information
in the diagnosis and treatment of these lesions. (Reservations are
The Mark of Beauty Gala will be held on Friday, November 14 from
7:00 p.m. to 10:00 p.m. at the Hudson Theatre in the Millennium
Broadway Hotel New York, 145 West 44th Street in Manhattan. The
event will feature a musical performance by stars of “Phantom
of the Opera”, hors d’oeuvres and open bar, and a silent
auction of celebrity items.
The exciting auction items include guitars signed by Miley Cyrus
and the Jonas Brothers; a bat signed by Reggie Jackson; a 2007 New
York Giants signed helmet; a Derek Jeter signed and framed New York
Yankees jersey; a Sandy Koufax signed and framed L.A. Dodgers jersey;
a Magic Johnson signed/encased basketball; a Joe Montana signed/encased
49ers helmet; a David Wright autographed bat; Yankees, Mets, Giants,
Jets, Patriots and Red Sox memorabilia; and other many other collectibles.
People can also bid on a NASCAR driving experience; a Fighter Pilot
for a Day experience; a trip for 4 to the 2009 Masters; a Sonoma
Wine Extravaganza; and VIP tickets to many events.
For information on the clinic, gala, and auction – and to
make reservations and obtain tickets – please visit www.birthmark.org
or contact Basia Joyce at (518) 374-2062 or firstname.lastname@example.org.
VBF is also seeking corporate sponsors as well as donations of
silent auction and gift bag items. (All donations are tax deductible.)
Please contact Basia Joyce if you would like to contribute to this
organization—which has had such a profoundly positive impact
on more than 35,000 families worldwide.
About Vascular Birthmarks Foundation (VBF):
Vascular Birthmarks Foundation (VBF) is the leading not for profit
in the world for families afflicted with vascular birthmarks, tumors
or syndromes. It is an international organization that networks
families to the appropriate medical professionals for evaluation
and/or treatment and provides informational resources. VBF also
sponsors physician education, research, and programs that promote
acceptance for living with a birthmark. Programs include Babies
with Birthmarks, Orphans with Birthmarks, and VBF Day of Awareness.
# # #
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 email@example.com