Story Published:
Sep 2, 2008 at 10:00 AM PST
Event Details
Date: September 20, 2008
Time: 4pm - 1am
Location: Embarcadero Resort Newport, Oregon
Link: http://www.friendsforpws.org
Adult Price: $20
Organization: Friends For PWS
Event Description
We are Friends For PWS, a non-profit organization. We are based out of Lincoln County, Oregon. Our purpose is to raise awareness and money for Prader-Willi Syndrome (PWS) a little known genetic disorder that affects a 22-month-old child in our community, Sequoia Chavez.
PWS is a deletion of the 15th chromosome that occurs during conception. Some of PWS’s major characteristics include low muscle tone, sleep apnea, diabetes, mental retardation, developmental delays, incomplete sexual organs, with the most threatening being uncontrollable hunger due to the inability of the brain to regulate hunger. This can cause life-threatening obesity. Without constant
supervision and a secure home this disorder can be extremely dangerous for the affected individual.
We are determined to make a difference in Sequoia’s life as well as others with PWS. We feel very strongly that through awareness and research we can help ease the everyday obstacles that occur with this terrible disorder, and help with the enormous medical expenses that go along with PWS.
To accomplish our purpose, we are hosting our first annual Parrott Head Party, a Jimmy Buffet themed event, and we could use your help in getting the word out.
It is September 20, 2008 at the Embarcadero Resort in Newport, Oregon, from 4pm-1am. This event will be packed with fun. We have two live bands, Apocalypso a steel drum band and Beadhead from Portland. There will be a Silent Auction, Hula Dancer and Great Food.
Tickets are available at TicketsWest.com, all Safeway Tickets West Ticket Centers, or 1-800-tixx. Tickets are $20 all tickets are subject to convenience charge at TicketsWest.com
This is a 21 and over Event.
You can also visit our website at FriendsForPWS.org for more information.
Hope to see you there.
friendsforpws@yahoo.com
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