Newsletter

October 2004
SWSC Launches New Website

SWSCOMMUNITY.ORG

The Sturge-Weber Syndrome Community (SWSC) is proud to announce that our new website is up and running. We hope the information contained in the site will prove valuable to patients, parents, families, friends, and the medical community.

Barely a year ago, the SWSC became a branch of the Vascular Birthmarks Foundation (VBF). Since that time we have grown, and the need to revise and update our website became critical. As we came into contact with an increasing number of parents of children with SWS, and with adult SWS patients, the SWSC realized the need to fill an important void in the dissemination of knowledge and hope about SWS.

By providing all information and services on a voluntary basis, the SWSC is better able to serve those living with SWS. We feel that it is important that patients and families just learning about SWS, have all the necessary information regarding diagnosis and treatment option, in a timely manner. The SWSC also recognizes the need for adult SWS patients to get information on treatment options, as well. Also, we feel it is our obligation to reach out to the medical community in order to generate interest in treatment as well as research into the disease.

We will be adding more information and features in the near future, so be sure and check back for further updates and improvements.

Sturge-Weber Syndrome Community

In their own words…

The SWSC Volunteers are here to serve SWS patients and families. The volunteers consist primarily of SWS patients and family members; however, we also have volunteers from within the port wine stain community. Here are just a few of our Community Volunteers:

Glenda Ethington - SWSC Co-founder, Administrative and Publications Volunteer
Welcome to the SWSC, everyone! I became involved with SWS after my first grandson was born with the disease. I later joined with other parents and patients with SWS to form a support system. In May of 2003, we published the original website, known then as the Sturge-Weber Community. In addition to the SWSC, I’m involved with the VBF, Birthmarks.com and other organizations working to make life better for patients and families living with vascular birthmarks.

Tiffany Ethington - SWSC Co-Founder, Patient Advocate and Welcome Volunteer
Hello everyone. My 10-year-old son has SWS. I have worked behind the scenes for years, helping with projects and supporting efforts concerning SWS. I, along with my son Glen, have helped with various fundraising events to support vascular birthmarks.

Elena Mendez - New Parent Services Volunteer
My name is Elena and my three-year-old daughter was born with a facial PWS. I sadly realized that there was not much education in the medical field about PWS/SWS. I promised my daughter that something good will come of this, and I made a promise that I will help all new parents, the way I was helped and guided when my daughter was born. I have continued to educate myself, and get involved with helping others in any way that I can.

Brenda Villa - Ambassador Volunteer
Hello my name is Brenda. I would like to give you a little background as to why I have joined and participate in this group. Living with PWS and SWS is not an easy life; especially when your parents are told, “It’s just a birthmark.” Then they take you home without the knowledge that you have a syndrome due to the birthmark. I lived 32 years before I heard the words “Sturge-Weber Syndrome”. I was born June 17, 1967, in Wilmington California, and weighed-in at 8lbs 8oz. My PWS was noticed right after birth and I was taken to UCLA Medical Center, where they spent three days giving me the once-over. They found the stain covered my entire face, neck, chest, back, left arm, left hand, some on my rear, and left leg and foot. Let’s say close to 65 - 85% of my body. I was sent home on day three with my parents being told, “It’s just a birthmark - We are unable to do laser because it may kill her. - She should be fine”. I was… for a while. For these reasons, I wanted to become the SWS Ambassador Volunteer. To let you know it is possible to live with SWS!

Jinny Wylie - Patient Advocate and Support Group Manager
Hi, my name is Jinny. My son, Austin has Sturge-Weber Syndrome. I started on this journey when he was diagnosed at nine moths old. I started reading, studying and learning everything I could. The doctors weren't that knowledgeable on SWS. I have always wanted to help others out, so they don't have to go through what I did. This has been a blessing in so many ways. I'm glad to be a part of the SWSC and the VBF. I truly look forward to getting to know everyone and help in any way that I can.

· If you would like to become an SWSC volunteer, please contact us: info@swscommunity.org

Plans Are Underway for SWSC Conference

The SWSC is planning a conference for Sturge-Weber syndrome in the near future. We are working hard to bring world-renowned physicians and researchers together, in order to provide the latest information on the diagnosis and treatment of Sturge-Weber syndrome and port wine stain issues.

Please check the website for the latest conference updates. Sign-up for our monthly online newsletter, and receive all the SWSC news directly.

VBF Establishes New Programs and International Branches

The Vascular Birthmarks Foundation is working hard to improve the lives of those living with vascular birthmarks. Please visit the VBF website for all the latest news. Here are latest projects and services:

• VBF Announces: Babies With Birthmarks – A Worldwide Educational Outreach Program – This program, founded by Linda Shannon, will establish guidelines for the diagnosis and treatment of vascular birthmarks.
• VBF and THTF Form An Alliance to Provide Information and Treatment For Families All Over the World Affected by a Vascular Birthmark – Dr. Marcelo Hochman has established a new foundation, The Hemangioma Treatment Foundation, to provide treatment for children with vascular birthmarks. Dr. Hochman and Linda Shannon have created an alliance between the VBF and the THTF in order to better serve and network children into treatment and “to provide complete assistance to families affected by a vascular birthmark”.
• The VBF Establishes International Branches - These organizations will help to ensure children worldwide with vascular birthmarks, receive the proper care and treatment. The new branches are in Israel, Europe, Canada and the US. Please visit the VBF website for details.

Vascular Birthmarks Foundation

Always seek the advice of a physician or other medical professional for diagnosis and treatment. The SWSC and/or VBF are not responsible for the content or accuracy of any information, advice or links on the site.

The SWSC is a branch of the Vascular Birthmarks Foundation. VBF is a fully approved not-for-profit. Your donations are tax deductible.
Federal Tax ID 16-1515227