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
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
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
Glenda Ethington, Co-founder, Administrative and
Tiffany Ethington, Co-founder, Patient Advocate,
Elena Mendez, New Parent Services Volunteer
Jinny Wylie, Patient Advocate, and Support Group
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
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
MARYLAND – Paul Siegel
Paul has both SWS and KT, is attending college, and enjoys Anime
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
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