SWSC Launches New Website
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
Meet the Volunteers
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
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
Tiffany Ethington - SWSC Co-Founder, Patient Advocate and
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: firstname.lastname@example.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
VBF Establishes New Programs and International
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
- 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