SWSCC News - November 2007

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Light a Candle of Hope
This Holiday Season, remember to add VBF/SWSC to your gift list.
Help VBF/SWSC light a candle of hope for all children and adults living with vascular birthmarks.
Make your online donation now.

Adults with SWS Making a Difference

The Sturge-Weber Syndrome Community announces our SWSC State and International Representatives. This volunteer group is the first of its kind, as each volunteer representative is an adult with Sturge-Weber syndrome. They are here to offer support and encouragement for individuals and families living with SWS.

Currently, our volunteers represent Canada, the United Kingdom, and the United States. The State Reps are Kathy Wyrick, Brenda Villa, Paul Siegel, and Michelle Mora. The International Reps are Tom Gilbert of Canada, and Kay Lewin of England. Glen Ethington of Glen’s Gang is the Honorary Child Rep. Glen’s Gang hosts a newsletter and pen pal group for kids with birthmarks.

To learn more about our Representatives, and to contact a volunteer, please visit the “About Us” page on the SWSC website.

If you are an adult with SWS, and would be interested in joining our volunteer staff, please contact SWSC.

REASEARCH – Hunter Nelson Sturge-Weber Center at Kennedy Krieger Institute
http://sturgeweber.kennedykrieger.org

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

SWSC extends a special “Thank You” to Dr. Anne Comi, Director of the Hunter Nelson Sturge-Weber Center at Kennedy Krieger Institute, for her dedication and hard work on behalf of individuals and families living with SWS. Dr. Comi attends the VBF conferences, where she presents the latest information on SWS. She also participates in the conference clinic sessions where physicians meet and consult with patients and families regarding the diagnosis and treatment for SWS and related conditions. In addition, she serves as the “Ask the SWS Expert” for the SWSC and VBF. Thank You Dr. Comi, and the entire staff at the Sturge-Weber Center!

Glen’s Gang is Growing
Come Join the Fun!

Kids, you are invited to join Glen’s Gang, the newsletter and pen pal group for kids with vascular birthmarks and their siblings. The group now has over 50 members from all over the world.

Kids can share stories about what is going on in their lives; or pictures, drawings, poetry, hobbies – anything that interests you. Membership is free, and you will receive a VBF Kids Who Care bracelet, plus the Glen’s Gang newsletter. Kids also have the opportunity to write to other kids in the group as pen pals. Glen sends out special mailings on holidays for all his friends, so be sure to sign up now to receive the holiday mailing for December 2007.

Have your parent or guardian enroll you in Glen’s Gang by visiting the SWSC or VBF websites and click on the “Glen’s Gang” link, or write to us at Glen’s Gang, C/O SWSC, P.O. Box 24890, Lexington, KY 40524-4890.
We hope to hear from you soon!
Your Friend, Glen

New - Free Publication
Glen Has Laser Surgery
Treatment for Port Wine Stain
A Guide for Parents and Children

Download the latest free publication courtesy of SWSC and VBF, “Glen Has Laser Surgery, Treatment for Port Wine Stain – A Guide for Parents and Children”. The booklet is easy for both adults and children to understand. Pictures help illustrate the entire process, from check in, resting at home, and follow up visit with the doctor. The forward is written by Dr. J. Stuart Nelson of the Beckman Laser Institute at Irvine, CA. Dr. Nelson also serves as Medical Director for VBF and is on the Medical Advisory Board for SWSC.

Download the booklet from the SWSC/VBF websites, or to receive a free published copy contact SWSC.

The Vascular Birthmarks Foundation (VBF) and Co-sponsor Beckman Laser Institute (BLI) and Medical Director Dr. J. Stuart Nelson, held the 2007 Port Wine Stain and Vascular Birthmarks Conference on November 2-3, 2007 in California. The conference titled “Research Holds the Key”, took place at The Island Hotel at Newport Beach and BLI on the campus of the University of California-Irvine. The conference was presented by VBF and BLI, along with BLI, Inc, Patricia Beckman, Dr. Michael W. Berns, Dr. Bruce J. Tromberg and Laser Microbeam and Medical Program (LAMMP), and Cynosure Corporation.

The conference focused on the latest research findings, treatments for port wine stain and hemangiomas, as well as information regarding related conditions and syndromes affecting those with vascular birthmarks. Significant research was presented regarding the histopathology and treatment of port wine stains, and understanding the pathology of hemangiomas which are now noted to be stem cell tumors.

Clinic teams consisting of world-renowned physicians in the field of vascular birthmarks were on hand to meet with patients and families in a private consultation at BLI, to assist in the proper diagnosis and treatment of a variety of conditions related to vascular birthmarks.

Among the featured conference speakers was Alejandro Berenstein, M.D., named this year’s recipient of the “VBF Physician of the Year Award” for his outstanding and innovative techniques in treating massive, complicated, and often life-threatening vascular malformations and hemangiomas. Martin Mihm, Jr., M.D., received the first “Dr. Michael W. Berns Achievement Award” for outstanding scientific achievement.

Other physicians presenting the latest advances in the treatment and diagnosis of vascular birthmarks and important research findings included conference co-sponsor, Dr. J. Stuart Nelson along with Dr. Martin Mihm, Jr., on port wine stains; Dr. Milton Waner, Dr. Lou Fink, and Dr. Yupo Ma on hemangiomas; Dr. Kamiab Delfanian on Klippel-Trenaunay syndrome (KTS); and Dr. Anne Comi on Sturge-Weber syndrome (SWS).

Special guest speakers were VBF President and Founder Linda Rozell-Shannon reporting on her Ph.D. studies “Measuring the Impact of Hemangiomas on Maternal Stress”, and Stephen Dale of the “Stephen Dale Project” who sang and gave an inspirational speech on his personal experiences of living with a facial port wine stain. The “VBF Service Award” was presented to Andrea Giancarli, and the first-time annual “VBF Day of Awareness Coco Award” was presented to Natalie and Brian Bolinger in honor of their daughter Nicole “Coco” Bolinger for their outstanding fundraising efforts.

In addition, VBF sponsored special sessions on billing and insurance appeals, makeup sessions, and family support.

The VBF holds yearly conferences, alternating between California and the east coast. The 2008 conference will be held in New York, NY.

Alejandro Berenstein, M.D., was named this year’s recipient of the VBF Physician of the Year award for his outstanding and innovative techniques in treating massive, complicated, and often life-threatening vascular malformations and hemangiomas.
Dr. Berenstein is the Director of Beth Israel’s Hyman-Newman Institute for Neurology and Neurosurgery (INN) at Roosevelt Hospital in New York City, a state-of-the art facility for the diagnosis and treatment of neurological diseases and complicated vascular malformations and hemangiomas. He is a pioneer in the field of Interventional Neuroradiology, a specialty that utilizes minimally invasive procedures to treat conditions related to the vascular system of the brain, head, face, spine, and spinal cord.
Dr. Berenstein created and developed the first Division of Interventional Neuroradiology (surgical Neuroangiography) in the United States. The Hyman-Newman Institute for Neurology and Neurosurgery (INN) at Roosevelt Hospital in NYC is a multidisciplinary center for the treatment of arteriovenous vascular malformations (AVM), brain aneurysms, and other vascular tumors and abnormalities. He also holds patents on several devices used to treat these conditions. He is a prolific and popular lecturer and is co-author of Surgical Neuroangiography, the five-volume definitive work in the field of interventional neuroradiology. During his career, he has written over 100 publications in peer-reviewed journals, and has given over 600 presentations worldwide.

Thanks to everyone who helped with the evolution and growth of the Sturge-Weber Community, the Sturge-Weber Syndrome Community, and the Sturge-Weber Syndrome Community Canada. We couldn’t have come this far without your help and inspiration along the way, especially our SWSC Volunteer staff. A special thanks goes out to Linda Shannon and everyone at the VBF, and to Missy Scott for her wonderful web design.