About the Sturge-Weber Syndrome Community Canada

The Sturge-Weber Syndrome Community Canada (SWSCC) is a chapter member of the Sturge-Weber Syndrome Community (SWSC), a branch of the Vascular Birthmarks Foundation (VBF). The SWSC was founded by parents of children with Sturge-Weber syndrome (SWS) and individuals with SWS. In 2005, the SWSC partnered with volunteers in Canada to form the SWSCC, the first website dedicated to SWS in Canada.

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

SWSCC Community Volunteers

As a volunteer group founded by an individual with SWS, the SWSCC wants to demonstrate the positive side of living with SWS. While SWS can have devastating effects, most often individuals with the disease can lead happy productive lives. Many people with SWS have accomplished careers, raise a family, and are leaders within their own communities.

Stephen Hawkins – SWSCC Assistant Volunteer – Stephen became involved with the SWSCC through his daughter, Tabitha, who has SWS. Shortly after Tabitha was born, the doctors were unable to control her seizures. At the age of three-months-old she underwent a hemispherectomy, a surgical procedure where half of her brain was removed. Now a teenager, Tabitha is losing her eyesight to glaucoma. Stephen sold almost all his possessions to take Tabitha on a trip across Canada, so she could see all the places she had heard and read about, before her sight is gone.

Tabitha Dunphy – SWSCC Assistant Volunteer – Some people might consider Tabitha’s achievements a miracle. But for Tabitha, they are just the normal things anyone else her age faces. The difference is Tabitha has SWS and as an infant underwent surgery where half her brain was removed. She and her father Stephen took time out in the spring/summer of 2005 to travel across Canada. Tabitha has served as a goodwill ambassador for both her country and SWS. During their travels, she and her father visited other SWS families, and helped raise awareness for SWS across Canada.

Lise Daoust - French Translations - Lise founded Anomalie Vasculaire, a French language website for vascular anomalies. She assists with translating the SWSC-Canada website into French. www.anomalievasculaire.org

mission statement

The Sturge-Weber Syndrome Community, a branch of the Vascular Birthmarks Foundation, provides support and services freely and upon a volunteer basis for individuals and families living with SWS and vascular birthmarks, while sponsoring research and promoting physician education and awareness, as well as education of the public at large.