A Day Of Awareness Is Set For Sturge-Weber Syndrome

When the Sturge-Weber Foundation (SWF) decided to hold the second annual Sturge-Weber Syndrome Day of Awareness fundraiser, there was no question about how to get it organized on the local level. Karla Priepke, the organization’s new director of community affairs, already had lots of ideas.

Mrs Priepke, who lives in Sandy Hook with her husband, Peter, and their son, John, 22, is heading the organization of the event that has the goal of raising public awareness and understanding of Sturge-Weber Syndrome, Klippel Trenaunay and Port Wine Stain, three related conditions, as well as to raise funds or SWF.

 This year the event will feature sale of stickers marking the day. Last year the event included a “wear jeans to work” incentive, but many businesses did not want their employees to don such casual clothing even for a good cause. So the stickers, designed by Mrs Priepke, are an option. The sticker features a wind-blown tree with the foundation’s motto, “The stronger the wind, the tougher the trees.”

Although birthmarks called port wine stains are not rare, about 1,000 of the babies born with a port wine stain each year also have Sturge-Weber Syndrome (SWS). Even fewer have Klippel Trenaunay Syndrome (K-T).

SWS can cause glaucoma, sometimes at birth. Babies born with SWS can be subject to seizures that can be intense and serious and can lead to a stroke-like weakening on one side of the body, and to retardation of motor and cognitive development in varying degrees. Drugs for seizure control often do not work and can do other damage to the body. K-T involves a port wine stain on the body affecting bone and muscle tissue and may involve internal organs.

Prior to the founding of the Sturge Weber Foundation 13 years ago, so little was known about SWS that many children were not even diagnosed properly. Yet it afflicts more children than some other genetic conditions that are widely known.

“There are more children with Sturge-Weber than with cystic fibrosis,” Karla Priepke said. “There are 15,000 – it affects every ethnic group, every race.”

Although John Priepke was diagnosed with SWS when he was nine weeks old, it was not until 1998 that his parents learned of the foundation. Following the foundation’s conference that year, Karla and Peter became the Connecticut area representatives and have since hosted an annual Northeast family picnic. This year’s event is planned for October 6.

More information about SWS can be found at the Web site www.sturge-weber.com or by calling the foundation at 800-627-5482. Donations for research and education into SWS may be sent to the Sturge-Weber Foundation, PO Box 418, Mt Freedom, NJ 07970-0418.  The foundation is a 501 (c) (3) non-profit organization. 

Those who make a donation to the foundation will receive a packet of information about the syndrome and the work of the foundation.

Karla Priepke can be reached at 426-8811 or by sending email to pkjprie@aol.com.