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What is Prader-Willi Syndrome?Prader-Willi syndrome (PWS) is a complex genetic disorder affecting the hypothaumus of the brain, causing a chronic feeling of hunger that can lead to excessive eating and morbid obesity.
Prader-Willi syndrome is a lifelong condition complicated by developmental delays, low muscle tone, mental retardation, and behavioral issues.
Approximately 80 of the children in Utah with the syndrome have not been diagnosed. Early diag- nosis and intervention can prevent many of the complications associated with the syndrome, in- cluding morbid obesity, diabetes, congestive heart failure and respiratory failure. Prader-Willi syndrome is one of the 10 most com- mon syndromes seen in genetic clinics. There is no cure at this time, but—there is hope!
Why Walk for Prader-Willi Syndrome?
The purpose of the Walk for Prader-Willi Syndrome is to promote awareness, to support children and family members who struggle with this syndrome every day, and to raise funds for the Utah Prader- Willi Association (UPWA).
These tax-deductible donations will be used to help fund medical research, to sponsor Utah PWS conferences, and to provide respite care and edu- cational materials for Utah families. This year we also hope to send Utah families to the the National PWS Conference and help 20 of our youth attend Camp Kostopulos, a special needs summer camp located in Utah ($360 per child).
What to expect at the Walk for Prader-Willi Syndrome
The Walk for Prader-Willi Syndrome will be held on May 6, 2006 at Sugar House Park in Salt Lake City (See map on registration form). Participants will be meeting at the Southeast Terrace at 10:00 a.m. There will be an easy (less than one mile), paved route around the park. The path will be lined with informative signs about PWS and footprints honoring those we know with PWS.
All walkers will receive a T-shirt and water bottle. After the walk, enjoy a delicious lunch (courtesy of Skool Lunch), clowns, balloon-tying, face-painting, an inflatable bounce house, kite flying and fiddling. Don't miss the exciting drawing for prizes awarded to the walk participants and the individuals and teams who collect the most donations. So come out, have fun, support the cause, and Walk.
It' Easy to Participate!
Join with us as we raise awareness of Prader- Willi syndrome! Register yourself, your family, or team to par- ticipate in the walk. Complete the Registration Form and mail it, along with the en- trance fee or collected donations by April 27th to:
Utah Prader-Willi Association
c/o Lisa Thornton, President
2625 E. Nottingham Way
Salt Lake City, Utah 84108
Collect Donations, fill out the Walker Donation Form , and send it to the above address. Dona- tions are essential to our fundraising goal. Just as important, when you speak with someone about donating to the Walk, you are helping to increase awareness about the syndrome. As an added bonus, when you collect $50 (individual) or $100 (family or team) in donations, your entrance fee is waived.
