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
For Immediate Release
Performed by multi-talented jazz artist Herbie Russ accompanied by a chorus of SWF family members, the songs' title is the Foundation's motto and exemplifes the strength of people living with these rare diseases. "Even if they have never heard of these syndromes, listeners are moved to learn more," said Karen Ball, SWF president and CEO. "While the SWF annual Month of Awareness has ended, events continue throughout the year. We invite others to share this video link with others around the world and join the SWF in its quest to build international awareness of these syndromes." Since 1987, New Jersey-based Sturge-Weber Foundation (SWF) has spent countless hours educating and driving awareness of SWS, K-T and PWS birthmarks, to dispel inaccurate and misleading information about SWS, KTS and birthmarks with the public, governmental agencies and the medical community. The best allies are the Foundation's own members, who can testify to the reality and the challenges of their lives. As a private not-for-profit organization, the SWF depends on people who have SWS - and other port wine stain conditions like KTS - to make themselves known. The SWF registry includes nearly 4,000 identified cases worldwide. Via the Foundation's Web site ('http://www.sturge-weber.org'), a network of families chat, comfort and encourage each other daily. As a 501(c)3 non-profit, the SWF is dependent on private, voluntary contributions. It receives no government funding. To learn more about the activities and how to support the Foundation in its work to fund research, visit the SWF Web site 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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