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

PRESS RELEASE

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 Manhattan.

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 required.)

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 basiajim99@nycap.rr.com.

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.

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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