Meet Kathy, SWSC's new Volunteer Representative

WELCOME TO
THE STURGE-WEBER SYNDROME COMMUNITY

A worldwide community for individuals and families living with Sturge-Weber Syndrome

This site is dedicated to the adults and children living with SWS, and their families and friends.

Each case of SWS is unique to the individual. The needs of a patient can vary greatly, depending on the symptoms and their severity.

We hope the information provided on this site will prove beneficial to those seeking help and answers about SWS.

Please contact the SWSC if you need further help or information, or if you have any suggestions or comments.

The Vascular Birthmarks Foundation
along with the

Present the 2009 Port Wine Stain and Vascular Birthmarks Conference

VBF Celebrates 15th Anniversary October 2009

Meet Devion, VBF's Kid with KT	Diana, one of VBF's Orphans With Birthmarks

VBF is very excited to announce that despite the economy the Port Wine Stain and Vascular Birthmarks Conference will be held in Irvine, California on Friday, October 9th and Saturday, October 10th. This conference will take place at the Beckman Laser Institute in Irvine, and at the Island Hotel minutes away in Newport Beach, California. Families should fly into the John Wayne Airport (closest to the event). There is no shuttle to the hotel, but a bus or cab is only $20.

We are also very excited to announce that VBF will be celebrating its 15th Anniversary in California this year! Come join us for a piece of cake to help us celebrate that “We Are Making A Difference.”

Dr. J. Stuart Nelson, along with the Beckman Laser Institute will be co-sponsors of this year’s conference. A very exciting research announcement will be presented on Friday evening by VBF Co-Medical Directors Dr. Martin Mihm and Dr. J. Stuart Nelson.

This year, the first 50 families that register will have meals included and FREE lodging for the Friday night and a $100 discount on Saturday night (total cost is $208.09 so families only pay $108.09 if they choose to stay the second night). Lodging will be at The Island Hotel, www.theislandhotel.com. In addition, the conference fee is only $50 per family and the clinic fee is only $50 per family. Anyone who cannot pay the clinic or conference fee can request that the fees be waived. A $25 deposit is required for each family registering for the conference and this fee cannot be waived. This deposit is non-refundable.

Read more

You can now register on line or download the registration form from the links and send it in with your $25 registration fee as soon as possible to VBF, PO Box 106, Latham, NY 12110. Please direct all questions to Basia at the above indicated phone numbers or email address.

Download the registration form

Register online for the conference

Register online for the clinic

Physician's Registration

2009 Day of Awareness Launches with
VBF's First Annual Challenge - 1mile Walk and 5k Run
JOIN US - WALK/RUN FOR BIRTHMARKS

VBF is launching this year’s Day of Awareness with its first ever 5k Run and 1 Mile Walk on Friday, May 15th, 5:00pm, in Colonie, New York. VBF was founded in this area and it is fitting that the first run/walk would occur here. We are delighted to announce that The Center for Facial Plastic Surgery & University Ear, Nose, & Throat of Northeastern New York is our Event Sponsor.

May 15th is our international Day of Awareness. Families and individuals helped by VBF will be raising awareness about vascular birthmarks by telling their personal stories and some will help to raise needed funds as well. This walk/run is our kick-off event for this year’s Day of Awareness. If you have been helped by VBF, then now is your turn to help us. Please join us. Tell your story and host a mini-fund raiser. It’s fun and it is your way to give back and help other families affected by a vascular birthmark.

Read more

Sign up to do a Day of Awareness Event (sign up from the Day of Awareness site)
Sign up to do the Day of Awareness Walk/Run (online registration)
Download walk/run registration form (pdf format)
Download walk/run brochure (pdf format)
Sponsor a Family (online)

VBF Day of Awareness Events

VBF Board Members

• VBF Parent Rep Natalie and Treasurer Brian Bolinger – Texas, October 2009 – Silent Auction and Texas Hold ‘Em – Annual event and largest Day of Awareness fundraiser. Their daughter Nicole had a hemangioma.
• VBF Secretary/SWSC Co-Director - Tiffany Ethington and son Glen Ethington. Tiffany and Glen have an annual interview on noon news to raise awareness. Glen has Sturge-Weber syndrome/facial Port Wine Stain, and organized a newsletter and pen pal group for kids with birthmarks and their siblings/friends called “Glen’s Gang”. VBF Chapter Director/SWSC Co-founder Glenda Ethington also helped organize this annual event.
• VBF Executive Assistant Basia Joyce – VBF Walk/Run organizer. Basia’s daughter Anna had a hemangioma.
• VBF Director of Musicians with Birthmarks Jenny Legary – Jenny is putting on a show in NY. Jenny has port wine stain.
• VBF Parent Rep Danielle Vlahos – Each year Danielle hosts a “Jeans Day” at her workplace. Danielle’s son Cole had a hemangioma.
• VBF Parent Rep Lianne Chase – Team running in the VBF Walk/Run in NY. Lianne’s son Cody has a lymphatic malformation.
• VBF Legal - Barbara Rothaupt – VBF Walk/Run organizer
• VBF President Dr. Linda Shannon and daughter Christine Shannon – VBF Walk/Run organizer. Christine had a hemangioma on her lip and was the inspiration for the organization of VBF.
• VBF Parent Rep Elysa Baron and her daughter VBF Student Rep Saige Cavayero – Selling VBF Kids Who Care bracelets and organizing a team for the VBF Walk/Run. Saige was the inspiration for the bracelets. She designed them as a fundraiser for the first VBF Day of Awareness. Glen’s Gang and the VBF Kids Who Care program used Saige’s original design for adult bracelets and designed a blue/white swirl bracelet for children. Saige had extensive facial hemangioma.

• Donna Ducker and Evan Ducker – International Event - Buddy Booby Read-Along – Buddy Booby is the mascot for VBF. Mother and son authored the “Buddy Booby’s Birthmark” book about a booby bird with PWS. Evan Ducker has a facial PWS
• Lisa Burdick – Saegertown, PA Collection Box
• Allen Stotler – Sunrise, FL - Collection Box and VBF Starter Kits
• Arlin Diaz – Hopelawn, NJ - Collection Box
• Mike Jackson – Newton Centre, MA – VBF Starter kits
• Rita Jones - Grand Saline, TX - Collection Box
• Kate Steele – Dekalb, IL – Collection Box and VBF informational materials - In Honor of Aliyah Steele and VBF
• Karenina – Advance, NC - in Honor of daughter, Juliana Grubb – VBF informational materials
• Bianca Shemper – Hattiesburg, MS – VBF Stickers
• Kathy Wyrick – Lake City, FL – Article in local paper and informational pamphlets
• Jan and Andrew Dreger – 3rd annual Awareness Day Event at family
  owned/operated restaurant- Campbell's Boat House in Media, PA. Percentage of sales donated to VBF
• JoAnn Campbell – Media, PA - Buddy Booby Birthmark Read Along to students at St. Cornelius School. JoAnn is a teacher in Chadds Ford, PA. Also, video montage shown to students of grandson Owen Dreger.
• Rabbit Hill Nursery School – Springfield, PA - Buddy Booby Read Along to Owen Dreger's Pre-school class.
• Vanessa Beall – Aptos, CA – Collection Box – In honor of Lillie Nichols
• Christine Sylvester – Milwaukee, WI – postcard and sticker campaign to friends and family
• Kathleen Miller – Slingerlands, NY – Lunch and Learn, collection box – In honor of Camryn Shea Miller

• VBF Latin America - Andrea Domingues - São Paulo, Brazil - Medical Lecture – Each year Andrea hosts a meeting of People with Hemangioma and Linphangioma Brazil. The conference is organized by ABRAPHEL, a Brazilian association for people with Hemangioma and Lynphangioma. Andrea’s daughter, Gabrielle, has Proteus syndrome.
• VBF India - Santo Banerjee – Kolkata, West Bengal, India – Writing an article in the local newspaper. Santo’s son, Sumangal, has SWS.
• VBF Poland – Ewelina Ochab – plans pending
• Sturge-Weber Syndrome Community (SWSC) – Lexington, KY - Tiffany and Glen Ethington – Tiffany and Glen have an annual interview on noon news to raise awareness. Glen has SWS/PWS and organized a newsletter and pen pal group for kids with birthmarks and their siblings/friends called “Glen’s Gang”.
  • Glenda Ethington , SWSC – distributing informational pamphlets to local hospitals/doctors.

It's never too late to register for the 2009 VBF International Day of Awareness. Our annual celebration for Awareness is on May 15, but events can be held at any time during the year. Join these dedicated families in supporting VBF and raising awareness for vascular birthmarks. Visit the VBF Day of Awareness website today for more details and to register your event. With your help, we are making a difference!
http://birthmark.org/awareness

Bags for Birthmarks

You can help to “Sponsor A Family” so that they can attend the VBF annual medical conference and receive a treatment plan. Donate a new or gently used high-end, vintage, or designer handbag or bid on one at www.birthmark.org. Both ways help! Tell your family, friends, or colleagues that they can help too by donating or bidding on a handbag

To donate a bag, click here, fill out the form, and mail it to us.

To get a bag, click here.

New Research

Use of the Atkins diet for children with Sturge-Weber Syndrome

New Year's Eve Charity Bash to Benefit VBF (pdf invitation)

VBF Mark of Beauty Gala and 2008 Conference
a HUGE success

VBF took on a big task this year. It was our first ever gala in NYC (Mark of Beauty) at the Hudson Theatre in Times Square on Friday evening, November 14th. We also held our annual international conference the very next day at the Beth Israel PACC at Union Square. The responses from those who attended the gala and/or the conference were similar. Comments included such descriptors as “fantastic” and “phenomenal” and “one of the best galas I have ever attended” and “the most informative conference on vascular birthmarks” and so on. Almost overnight, we received over 30 thank you notes from families attending the conference and almost as many from individuals who attended the gala.

There were 285 attendees at the gala and 240 at the conference. We were privileged to have two “phantastic” performers – Gary Mauer and Beth Southard, stars of the Phantom of the Opera. They brought the house down with the finale song (Phantom), especially when they were joined in the finale with Christine Shannon and Stephen Dale.

Gary Mauer (star of Phantom of the Opera) Stephen Dale, Christine Shannon and Beth Southard (wife and co-star of Phantom) after their spectacular performance at the gala	Barbara Rothaupt, VBF Ex. Asst. Basia Joyce, and VBF President Dr. Linda

To read the entire story click here: http://www.birthmark.org/08gala.php

Dr. Roy Geronemus, VBF 2008 Physician of the Year

Roy G. Geronemus, M.D., Director of the Laser & Skin Surgery Center of New York, graduated from Harvard University and pursued his medical education at the University of Miami School of Medicine.

He trained in Dermatology at the New York University Medical Center where he was the Chief Resident and subsequently underwent a fellowship training in Mohs Micrographic Surgery and Cutaneous Oncology. He is a Clinical Professor of Dermatology at the New York University Medical Center where he has founded its laser program and served nine years as its Chief of Dermatologic and Laser Surgery. He is also the Director of the Skin/Laser Division in the Department of Plastic Surgery at the New York Eye & Ear Infirmary. He is Past President of the American Society for Dermatologic Surgery and the American Society for Laser Medicine and Surgery. He has received the Ellet Drake award for outstanding contributions to laser medicine and the Leon Goldman award for excellence in clinical laser research. Dr. Geronemus has been a featured speaker of the American Academy of Dermatology, American Society for Dermatologic Surgery and the American Society for Laser Medicine and Surgery for many years, as well as speaking to other national and international audiences. He has published over 200 medical articles, chapters and books, including the most recent 2nd Edition of Illustrated Cutaneous and Aesthetic Laser Surgery.

An original forerunner in the application of the pulse dye laser for the treatment of port wine stains and other vascular birthmarks, he has been involved with the development of several new laser systems and therapeutic techniques, which are now commonly used throughout the world.

Dr. Geronemus is also the Chairman of the Board of the New York Stem Cell Foundation.

To make an appointment with VBF's 2008 Physician of the Year, please contact Jamie Giangrande, Executive Assitant at the Laser & Skin Surgery Center in New York by calling 212-686-7306 (Ext. 255) or by email at jgiangrande@laserskinsurgery.com Please visit their website at

www.laserskinsurgery.com

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