Newsletter

January 2004
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.
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**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 birthmarks.

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 Children’s Hospital.

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.

Community Updates
In addition to our Chapter Membership with the VBF, the SWSC is planning web site updates and improvements. Please check the website for announcements.

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.

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