The Sturge-Weber Foundation 13th International Conference
Conference Brings Together Families and Dedicated Clinicians and Scientists to Improve the Quality of Life for Those Affected by Sturge-Weber Syndrome
(firmenpresse) - DENVER, CO -- (Marketwired) -- 07/25/13 -- The Sturge-Weber Foundation today announced that researchers, clinicians and families affected by Sturge-Weber syndrome (SWS) will convene for the 13th Sturge-Weber Foundation International Conference, July 25-27 in Denver. The conference is an opportunity to participate in three days of education, information, enlightenment and networking on Sturge-Weber syndrome and related port wine birthmark conditions. Speakers will address the medical aspects of SWS, a rare neurological condition that can include a facial port wine birthmark, seizures and glaucoma.
Of special interest will be the recent discovery of the gene mutation responsible for SWS and port wine birthmarks published in The New England Journal of Medicine. This discovery is the most significant medical advance to date in the pursuit of a cure for SWS. Several sessions on the role of the Struge-Weber Foundation and its members will be emphasized, along with discussions addressing the social-emotional and educational issues that families dealing with this rare disorder cope with every day.
"In addition to education and collaboration, the main goal of the conference is to offer a safe environment for patients effected by Sturge-Weber or port wine birthmarks where no explanations are needed, there are no overt looks to avoid, and celebrations can be shared for the wonderful gifts we bring to every life we touch," said Karen L. Ball, the founder, president and chief executive officer of the Sturge-Weber Foundation.
A specifically designed kids camp is in place for children of all ages to participate in age appropriate activities. For some young attendees, this will be the first time they have ever met another child who has SWS or a port wine birthmark.
Conference goers will have the opportunity to join the Miracle Miles Route to a Cure Walk in Stapleton, on Fri., July 26 to raise funds to support The Sturge-Weber Foundation.
Sturge-Weber syndrome (encephelotrigeminal angiomatosis) is a congenital, non-familial disorder of unknown incidence. It is characterized by a congenital facial birthmark and neurological abnormalities. Other symptoms associated with SWS can include eye and internal organ irregularities. Each case of SWS is unique and exhibits the characterizing findings to varying degrees.
Since its founding in 1987, the Sturge-Weber Foundation (SWF), a 501 (c) (3) not-for-profit organization, has provided information, education and friendly support to adults and families of children with Sturge-Weber syndrome (SWS), a neurological disorder characterized by a facial port-wine birthmark and neurological abnormalities, including seizures and glaucoma. In 1992, the SWF expanded its outreach to include Klippel-Trenaunay (KT), a vascular disorder involving a port-wine birthmark on the body or a limb. The SWF has initiated and supported comprehensive clinical and basic research into the diagnosis and treatment of these conditions, including the establishment of 10 Centers of Excellence in cities throughout the United States. These centers provide the comprehensive care necessary for treating adults and children who have a port-wine birthmark, SWS or KT. The SWF continues to collaborate, translate the research, and improve the quality of life and care for people with SWS and associated port-wine birthmark conditions. For more information, visit and on Facebook at .
Jennifer Devine
SmithSolve LLC for The Sturge-Weber Foundation
973-442-1555 ext 102
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Datum: 25.07.2013 - 04:30 Uhr
Sprache: Deutsch
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