MT. FREEDOM, N.J./EWORLDWIRE/March 24, 2006 --- The Sturge-Weber Foundation (SWF) is targeting the first week in May, 2006 as the 7th National Week of Awareness for Sturge-Weber syndrome (SWS), Port Wine Stain vascular conditions (PWS) and Klippel-Trenaunay (KT). The theme for this year’s Week of Awareness (WOA) is "Just One Thing."
The Foundation’s partners throughout the United States and select countries abroad will be holding a variety of awareness, fund raising and educational activities. Karen Ball, The SWF president and CEO, says, "Everyone has the ability to do just one thing to create public awareness, or raise even $1 towards partner support or to fund research."
SWS is a rare congenital neurological, ocular and cutaneous disorder of which the chief sign is a facial port wine stain birthmark.
The following two WOA events complement the many lemonade stands, garage sales and business events planned during the Week.
In Sparr, Fla., Erin Rosas, an SWF Board member, along with her husband Al, will be hosting a grand fund raising dinner at Rosas Farms. Rosas, who has KT syndrome with vascular malformations and related heart and seizure complications, has planned a gala night featuring jazz singer Ellen Livesay, nationally recognized inspirational speaker Pat Livingston, author of Bless This Mess, as well as actor Steve Raulerson and other surprise celebrities.
In Union, S.C., the Voiselle family, who have a newly diagnosed toddler, will be bringing coloring books and muffins to a local elementary school for a “Muffins for Myah” day. Schoolmates and teachers of the toddler’s siblings will gain insight into the day-to-day challenges the family faces and have the chance to make a contribution to the SWF’s work.
SWF partners and friends are encouraged to do “just one thing” to advance the cause and cure of these conditions. Just one visit with another customer in line at the post office, or one letter asking the receiver to send their financial gift to support the work of the Foundation will be valued.
Besides providing education, friendly support and referrals for its partners, The SWF is the largest not for profit funder of research into the causes, treatment and hoped-for cure of PWS, SWS and KT.
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