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Prune Belly Syndrome, also known as Eagle-Barrett Syndrome, effects 1 in 40,000 live births.Because it is so rare and uncommon, the media has been slow to respond to it.20% of patients are stillborn, 30% die of renal failure or urosepsis within the first two years of life, & the remaining 50% have varying degrees of urinary pathology.The Prune Belly Syndrome Network (PBSN) provides support and information to those who have prune belly syndrome, and to their families, friends and health care professionals.Please visit the CD page listed below to find the "Not The Only One" CD single now on sale! Written and arranged by Frank Walker & performed by SpoonWalk with Jen Chapin, with help from many talented friends.All proceeds from the CD Single (& “Party Marty’s” on the CD page) go directly to the PBSN website.The Prune Belly Syndrome Network exists to prove that a person born with Eagle-Barrett Syndrome CAN live a normal, productive life and to tell everyone that we are NOT THE ONLY ONE, which is a common thought among uninformed PBS people!With a LOT of help from his friends, Frank Walker (born 5/23/67 with Prune Belly Syndrome) has put together several music benefits to raise money for greater awareness of this condition and has been joined by several talented musicians along the way.Well over $30,000.00 has been raised through several music benefits since 2002!Our hope is to reach a time where that could be the minimum YEARLY number and many more benefits are being planned to ensure that!Letters have been written to Long Island's (& the nation's) premier entertainment publications & music organizations, as well as several radio & television stations.We’re asking for their (& YOUR) help in organizing several annual fundraising events of any kind, anywhere worldwide, in the hopes of doing enough to start gaining media attention nationwide & creating an amazing chain reaction!THESE are the reasons that the PBSN exists.
We need help, attention, research, hope.
There’s so much to do & we desperately need your help.
PBSN LINKS:
PRUNE BELLY SYNDROME NETWORK:
http://www.prunebelly.orgWLIE 2005 Radio Interview Snippet, courtesy of Mr. David Hilsenrath:
http://www.prunebelly.org/images/Frank%20interview.mp3PBS IN PLAIN ENGLISH FOR PARENTS:
http://www.spoonwalk.com/PBSNPlainEng.htmA 6th-GRADER WRITES ABOUT HIS YOUNGER BROTHER:
http://www.prunebelly.org/midgemaster.htmlPBSN FUNDRAISING:
http://www.spoonwalk.com/PBSNFundRsr.htm
http://www.prunebelly.org/fundraising.htmPBSN 2003 BENEFIT REVIEW:
http://www.prunebelly.org/review.htmlPBSN 2004 BENEFIT THOUGHTS:
http://www.spoonwalk.com/postPBNotes.htmAURAL FIX COMMUNIQUE MARCH 2004 ARTICLE:
http://www.auralfix.com/2004/3_04/AF_3_04_gigs1.pdfAURAL FIX COMMUNIQUE MAY 2004 ARTICLE:
http://www.auralfix.com/2004/5_04/AF_5_04_profile1.pdfPBSN 2005 CONVENTION:
http://www.spoonwalk.com/BostConv05.htmCAFÉ PRESS PBSN GENERAL MERCHANDISE:
http://www.cafepress.com/PBSNCAFÉ PRESS PBSN FW MERCHANDISE:
http://www.cafepress.com/frankwCAFÉ PRESS PBSN SPOONWALK MERCHANDISE:
http://www.cafepress.com/spoonwalk"NOT THE ONLY ONE" (by SpoonWalk with Jen Chapin) PBSN CD's:
http://www.cdbaby.com/cd/pbsn"NOT THE ONLY ONE" (by SpoonWalk with Jen Chapin)
PBSN Music Downloads (courtesy of CD Baby) available thru:
Amazon: http://amazon.com/s/ref=nb_ss_gw/102-5498568-5922534?initialSearch=1&url=search-alias%3Daps&field-keywords=spoonwalk+jen+chapin
Apple iTunes: http://phobos.apple.com/WebObjects/MZStore.woa/wa/viewAlbum?playListId=60656261
Bitmunk: http://www.bitmunk.com/view/media/6453633
Emusic: http://www.emusic.com/album/10923/10923337.html?fref=700329
PassAlong: http://www.passalong.com/Music/AlbumDetails.aspx?AlbumId=74282
PayPlay: http://payplay.fm/pbsn
Tradebit: http://www.tradebit.com/filedetail.php/503510
PARTY MARTY “JOIN IN THE BAND” Kids CD:
http://www.prunebelly.org/CD.htmlPBSN "WHEN I’M 64” T-SHIRTS from 2004:
http://www.parisistudios.com/prunebelly.htmlIrish Entertainer ANDY COONEY helps the PBSN:
http://www.spoonwalk.com/AndyWestbury.htm
http://www.andycooney.com
http://www.cooneytunes.comColumnist ED LOWE writes about the PBSN:
http://www.longislandpress.com/?cp=154&show=article&a_id=5061HARRY CHAPIN's newsletter, CIRCLE, writes about SpoonWalk & the PBSN:
http://harrychapin.com/circle/winter06/ffare_sw.htmSEVERAL NEW YORK-BASED PBSN ARTICLES CAN BE FOUND HERE:
http://www.myspace.com/frankwalkermusic
PBSN MUSIC & PUBLIC SERVICE ANNOUNCEMENT RECORDINGS CAN BE HEARD HERE:
http://www.myspace.com/frankwalkersongs
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