SWSC Joins With VBF
Monday January 12, 2004 13:55:51
The Sturge-Weber Syndrome Community (SWSC) is proud to announce
our merger with The Vascular Birthmark Foundation (VBF.) The SWSC
is now a Chapter Member of the VBF.
Linda Shannon established the VBF in September of 1995 after her
daughter, Christine, was born with a hemangioma. In 1996 the VBF,
along with Dr. Martin Mihm, established the Vascular Anomalies Clinic
at Albany Medical Center. Since that time, the VBF has assisted
in the establishment of several more clinics in the United States
and abroad. The mission of the VBF is to provide "support and
informational resources for individuals affected by hemangiomas,
port wine stains, and other vascular birthmarks and tumors"
and to sponsor "relevant research, and promote physician education."
The SWSC was founded in May of 2003 by parents and individuals
living with Sturge-Weber syndrome (SWS,) a rare congenital disease.
The most obvious characteristics of SWS are usually the presence
of a vascular birthmark (port wine stain) and neurological abnormalities.
Symptoms can include, but aren't limited to, calcification in the
brain, glaucoma, and seizures. Each case of SWS may vary as to symptoms
and their severity.
Originally, the group was called the Sturge-Weber Community and
served as a chat support group for SWS. The community established
bonds with other support groups and organizations, and in a few
short months, began to expand their efforts worldwide. The mission
of the community was broadened by the joint efforts of the KT Foundation
and the SWSC. A bond of trust and friendship was formed. Through
the open exchange of information, the groups were able to offer
a higher level of support and services to those in need. In turn,
the VBF stepped up and raised the level even higher.By obtaining
Chapter status, the SWSC will be able to broaden our outreach programs,
and to expand our support group for individuals and families living
with Sturge-Weber Syndrome.
For more information on the SWSC's VBF Chapter Membership, please
visit our website at: http://home.insightbb.com/~gnethi, or the
VBF site at http://www.birthmark.org.
Dr. Milton Waner, M.D. , SWSC Honorary Medical Chairman
Monday January 12, 2004 14:03:10
The Sturge-Weber Syndrome Community is proud to annouce Dr. Milton
Waner, M.D., as our Honorary Medical Chairman. Dr. Waner has pioneered
surgical techniques for the treatment of vascular birthmarks. With
the addition of Dr. Waner, the SWSC hopes to provide a wider range
of medical knowledge for Sturge-Weber Syndrome and the treatment
of port wine stains.
**Courtesey of the Vascular Birthmark Foundation**
Training Physicians From All Over the World Dr. Milton Waner, VBF’s
Honorary Medical Chairman, and one of VBF’s founding members,
has been leading the world in physician education concerning vascular
Physician education is one of VBF’s primary missions. As
such, we are proud to report that Dr. Waner is training surgeons
and dermatologists from all over the world on the current diagnosis
and management of vascular birthmarks.
Physicians from England, Spain, Israel, Greece, New Zealand, to
name a few countries, as well as from numerous states within the
US, are making the trip to Little Rock, Arkansas to spend anywhere
from several weeks to several months studying with the world renown
expert who heads up the Vascular Anomalies Program at Little Rock
Dr. Waner personally accommodates most visiting physicians by allowing
them to stay in his home during their training. Since there is very
little funding for physician education in this field, most of these
doctors pay their own expenses, and Dr. Waner provides them with
lodging and often meals as well.
Physician education is critical. Even to this day, little if anything
is taught on this subject in medical schools. Most physicians who
develop an interest in the field of vascular birthmarks find an
expert, such as Dr. Waner, via the internet. Many contact VBF and
are then directly referred to Dr. Waner.
Dr. Waner has also written a medical textbook that describes surgical
and management techniques. This was the first such reference book
in decades. Physicians from all over the world are using this textbook
to gain knowledge concerning the latest diagnosis and treatment
options for vascular birthmarks.
In addition to our Chapter Membership with the VBF, the SWSC is
planning web site updates and improvements. Please check the website
Please Note: There are no dues, and membership in the SWSC is not
required to receive information and/or services. Our staff operates
strictly on a volunteer basis.
You should consult your doctor or other licensed medical professional
before considering treatment. Information accessed through the SWSC
and the SWSC website is provided "AS IS" and without warranty,
express or implied. SWSC isn't responsible for the content or accuracy
of any information, advice, or links included on the site.