Company Information :
Sturge-Weber Foundation
PO Box 418
Mount Freedom, NJ 07970
USA
Ph. 973-895-4445 ext.4
Media Contacts:
Anne Howard
Director of Partner Programs
The Sturge-Weber Foundation
P.O. Box 418
Mt. Freedom, NJ 07970
Phone: (973) 895-4445
Fax: (973) 895-4846
Email: ahoward@sturge-weber.com
Media Advisory
The SWF also announced Texas Children's Hospital will serve as the lead COE to serve as the coordinating center. "Texas Children's Hospital has consistently answered the call for action on behalf of those living with Sturge-Weber syndrome since the SWF was incorporated in 1987," Karen Ball, SWF president and CEO said. "We are proud to partner with the Hospital as we increase the pace of discovery through translational clinical and research studies at the Centers of Excellence." Sturge-Weber syndrome is a rare congenital neurological disorder usually characterized by a facial port wine birthmark. Seizures and glaucoma are often part of the syndrome. It has no cure, no known cause and is found in both sexes and all ethnic groups. The Sturge-Weber Foundation, located in N.J., was started by Kirk and Karen Ball in 1987 after the birth of a baby who was diagnosed with SWS. In their search for more than a short paragraph in a medical text book, they began an organization that now includes families, clinicians, researchers and educators from around the world. The SWF provides information, education and friendly support to individuals and families coping with the disorder. It also instigates and funds research into the cause and cure. More information can be found at 'http://www.sturge-weber.org'.
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CONTACT:
The Sturge-Weber Foundation
1240 Sussex Turnpike
Randolph, NJ 07869
PHONE. 973-895-4445
FAX. 973 895-4846
EMAIL: ahoward@sturge-weber.com
http://sturge-weber.com
SOURCE: Sturge-Weber Foundation
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