About
THE STURGE-WEBER SYNDROME COMMUNITY

The Sturge-Weber Syndrome Community (SWSC) was founded by parents of children with Sturge-Weber syndrome (SWS) and individuals with SWS.

The founders felt it important that parents and patients have free and easy access to any and all available information on SWS. Oftentimes parents and individuals are overwhelmed when first hearing that they or their child has SWS. These are the times when many people can feel vulnerable. This is why the SWSC does not require membership or dues of any kind. There is no need to join or pay for any information or services provided by the SWSC. The SWSC operates solely on a volunteer basis.

Many physicians and hospitals are either not aware of SWS, or have limited knowledge and experience with the disease. That's when many people turn to the Internet in their search for support and information. The SWSC feels it is important that valuable information about SWS be readily and freely offered to patients and their families, as well as to the public in general.

The SWSC has a world-renowned staff of Medical Advisors, as well as Community Volunteers with first-hand knowledge and experience with SWS.

Community Volunteers
Glenda Ethington, Co-founder, Administrative and Publications Volunteer
Tiffany Ethington, Co-founder, Patient Advocate, Welcome Volunteer
Elena Mendez, New Parent Services Volunteer
Jinny Wylie, Patient Advocate, and Support Group Manager

Volunteer Medical Advisors
Dr. Milton Waner, Honorary Medical Chairman
Dr. Martin Mihm, Honorary Research Chairman
Dr. J. Stuart Nelson - Honorary Medical Chairman for VBF/SWSC-Canada, and Medical Advisory Board for SWSC/U.S.

SWSC State and International Volunteer Representatives

All of our State and International Representatives are adults who have Sturge-Weber syndrome. If you are an adult with SWS and would like to join our Volunteers, please contact us. It is the goal of SWSC to have Volunteer Reps in every state and country.

SWSC Representatives volunteer their time to support patients and families living with Sturge-Weber syndrome. SWSC Representatives are not qualified or authorized to give medical advice of any kind. Please consult a physician or medical expert on issues of diagnosis, treatments, and all other medical issues related to SWS. Please contact us and we will send your information to the appropriate state representative.

ARIZONA – Brenda Villa
Brenda is the mother of 2 teenaged boys, and was diagnosed with SWS as an adult.

FLORIDA – Kathy Wyrick
Kathy has glaucoma related to SWS, and enjoys making cards for holidays and special occasions.

LOUISIANA – Michelle Mora
Michelle Mora hosts the SWSC poetry corner, loves music and plays many instruments.

MARYLAND – Paul Siegel
Paul has both SWS and KT, is attending college, and enjoys Anime and WWE.

CANADA – Tom Gilbert
Tom also serves as the Director of SWSC-Canada, and was diagnosed with SWS as an adult.

ENGLAND – Kay Lewin
Kay is the mother of 3 children, and was diagnosed with SWS as an adult.

HONORARY CHILD REP – Glen Ethington
Glen was diagnosed with SWS as an infant, and hosts Glen’s Gang, a newsletter and pen pal group for kids with birthmarks and their siblings.

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