Newsletter

June 19, 2003
Sturge-Weber Community To Go International
G. N. Ethington
swsmailbox@excite.com
Saturday May 31, 2003 19:33:25

The Sturge-Weber Community would like to welcome all nations to join our Community. Please feel free to submit information on doctors, clinics, events, etc., from any country. In the near future, we hope to expand the web site and make it available in other languages. We want this site to reflect an International Community of hope and support, featuring a wide range of information. Please send information or suggestions to our contact address at: swsmailbox@excite.com.

Featured Link of the Month
G.N. Ethington
Thursday June 19, 2003 14:42:54

A new addtion to the SWC Newsletter is the Featured Link of the Month. We want to highlight and draw attention to the efforts of other families in the battle against devastating diseases.

The KT Foundation was formed by Mark and Del Metcalf in May of 2002. Five years ago, the Metcalf's became the parents of twins, Kyle and Kayla. Kyle was born with a hemangioma, and the doctors weren't sure of an exact diagnosis. The Metcalf's spent many months and thousands of dollars before finally finding an answer and proper treatment. Their son had Klippel-Trenaunay Syndrome. In order to help other KT families, they formed the KT Foundation. Please visit the web site to find out more about KT.

KT Foundation
http://www.ktfoundation.com

***If you have suggestions for future FLM sites, please contact us at swsmailbox@excite.com***

Upcoming Events
G.N. Ethington
Thursday June 19, 2003 14:19:59

Port Wine Stain Conference:

If you are interested in attending the Port Wine Stain Conference in New York, you need to register before September 1, 2003. The conference is co-hosted by the Vascular Birthmark Foundation and Dr. Roy Geronemus. Dr. Geronemus is the Director of the Laser and Skin Surgery Center in New York. The cost of the conference is $50 per family, and there is an additional $50 charge per family to have a private consultation with clinic doctors. You will need to bring medical records, photos, etc., to the clinic sessions. The conference is being held on October 17 & 18, 2003, so start making plans if you want to attend. For more information on the conference, visit the VBF's web site at http://www.birthmark.org, or the PWS group at http://www.birthmarks.com.

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Annual New England Picnic:

The Annual New England Sturge-Weber Family Picnic will be held on October 4, 2003, in Sandy Hook Connecticut. The fun begins at noon, and all are welcome. The picnic allows families touched by SWS, KT, PWS and similar conditons, the chance to get together and form lasting friendships. The event is hosted by Karla and Peter Priepke, whose 25 year old son, John, has SWS. There is no fee to attend, just bring your family and have fun. For more information, contact the Priepke's at pkjprie@aol.com.

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New Members and Associates
G.N. Ethington
Thursday June 19, 2003 14:57:29
New Members
Our newest member is Shannon Wilson. The mother of four children, her only son, Keegan, has Sturge-Weber Syndrome. Please welcome Shannon, Keegan, and her daughters, Kaitlyn, Lindsay and Haylee to the SW Community.

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Doctors
Thanks to Dr. Henry C. Vasconez for allowing us to include him in the SWC. Dr. Vasconez is the Chief of Plastic Surgery at the University of Kentucky Medical Center, Kentucky Clinic in Lexington, Kentucky. He is also Professor of Surgery and Pediatrics at UK. Please see the Doctors link on our web site for more information on contacting Dr. Vasconez.

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Please spread the word. If you know of anyone interested in joing the SW Community, please pass along the web site address. Also, before sumitting the name and information of any doctor, clinic, etc., please ask for their permission first.

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Please Note:The Sturge-Weber Community is not responsible for the accuracy of any information or advice provided in any links, articles or other information provided in the newsletter or on the web site. Please consult a doctor or other medical professional before seeking treatment. All information is provided on an "as is" basis.

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