Since 1987, The Sturge-Weber Foundation has been providing superior support to all individuals with port wine stain related conditions. The exceptional dedication of volunteers and professionals is the cornerstone of our success.
For those of you just beginning your search for answers - In the midst of all the challenges, there are many individuals and families who have experienced successes and shining moments. Read hereabout the good things that have happened and continue to happen in the lives of our members.
The SWF Center of Excellence (SWF COE) at Detroit Children's Hospital PET Center has been making some very insightful findings in their longitudinal study on neuroimaging markers of disease progression during the clinical course of Sturge-Weber syndrome. To date, thanks to participants thus far they have found that brain imaging with advanced MRI techniques combined with positron emission tomography (PET) of brain glucose metabolism is able to detect the extent of early brain involvement in young affected children. Children with brain metabolic abnormalities (seen by PET) extending far beyond apparent structural changes (seen by conventional MRI) in their brain are at risk for subsequent progression. The investigators are also studying a number of imaging markers that highly correlate with seizures and the cognitive development of the children. The obtained imaging and clinical data (including the results of a detailed neuro-psychology testing) may instruct families and physicians about the extent and severity of the disease, as well as potential progression that may prompt more aggressive treatment approaches such as resective surgery. The SWF COE is continuing to enroll children, as young as possible (over 6 months of age, with unilateral brain involvement) to participate in this crucial study. The imaging and clinical tests as well as clinical consultation are all free of charge, and the study funding is used to reimburse travel costs including airfare and hotel charges after completion of the visit. This is a longitudinal study and enrolled patients and families are requested to return for a follow-up visit 1 or 2 years after the initial visit to repeat the tests and assess if any interval progression occurred. For further information, please contact the principal investigator, Dr. Juhasz (office phone: 313-966-5136; email: juhasz@pet.wayne.edu). One family, who completed the longitudinal study recently, had this to say about their experience in Detroit: "We thoroughly enjoyed our time with you all in Detroit. You have a wonderful staff. Thank you for allowing us to participate. I have never participated in anything like this before but the wealth of information that it supplied us with over the last few years has been worth all the time and effort put forth." To learn more about exciting research on cognitive and learning issues related to SWS click here.
"The Stronger the Wind, The Tougher the Trees," uses portraits of individuals who are living with SWS, KT and PWS. The music is by Herbie Russ, jazz artist. View on YouTube.
Join the SWF Partners who have already added their voices to our Story at First Giving.
Newly Diagnosed? We are only a phone call away 800-627-5482
To learn more, click here.
NE Regional Conference
a time for renewal
July 24 & 25, 2009
Hamilton Park Hotel & Conference Center
Florham Park, NJ
Join us! This weekend will encompass many of the features we have all valued - the information from medical speakers, the educational materials you look for, but especially, the bonding and networking that renews the energy you and your family need to whether the good times and the no-so-good times fo life with SWS/PWS/KT.
There will be doctors speaking on neurology, dermatology and ophthalmology issues, sessions on famiy concerns, and programs for kids and teens. The regional conference is meant to be affordable, accessible, joyful and enriching for first time attendees and well-known friends. Learn more...
The Sturge-Weber Foundation | PO Box 418 | Mt. Freedom, NJ 07970-0418 USA
Phone: 973-895-4445 or 800-627-5482 | Fax: 973-895-4846 | Email: swf@sturge-weber.org
The SWF Center of Excellence (SWF COE) at Detroit Children's Hospital PET Center has been making some very insightful findings in their longitudinal study on neuroimaging markers of disease progression during the clinical course of Sturge-Weber syndrome. To date, thanks to participants thus far they have found that brain imaging with advanced MRI techniques combined with positron emission tomography (PET) of brain glucose metabolism is able to detect the extent of early brain involvement in young affected children. Children with brain metabolic abnormalities (seen by PET) extending far beyond apparent structural changes (seen by conventional MRI) in their brain are at risk for subsequent progression. The investigators are also studying a number of imaging markers that highly correlate with seizures and the cognitive development of the children. The obtained imaging and clinical data (including the results of a detailed neuro-psychology testing) may instruct families and physicians about the extent and severity of the disease, as well as potential progression that may prompt more aggressive treatment approaches such as resective surgery. The SWF COE is continuing to enroll children, as young as possible (over 6 months of age, with unilateral brain involvement) to participate in this crucial study. The imaging and clinical tests as well as clinical consultation are all free of charge, and the study funding is used to reimburse travel costs including airfare and hotel charges after completion of the visit. This is a longitudinal study and enrolled patients and families are requested to return for a follow-up visit 1 or 2 years after the initial visit to repeat the tests and assess if any interval progression occurred. For further information, please contact the principal investigator, Dr. Juhasz (office phone: 313-966-5136; email: juhasz@pet.wayne.edu). One family, who completed the longitudinal study recently, had this to say about their experience in Detroit: "We thoroughly enjoyed our time with you all in Detroit. You have a wonderful staff. Thank you for allowing us to participate. I have never participated in anything like this before but the wealth of information that it supplied us with over the last few years has been worth all the time and effort put forth." 
