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Hope Week community initiative continues on Thursday; Yankees reach out to Camp Sundown and the XP Society07/22/2009 1:42 PM ET
The New York Yankees are proud to continue HOPE Week (Helping Others Persevere & Excel) on Thursday by reaching out to Camp Sundown and the XP Society, which supports children who have Xeroderma Pigmentosum, a rare (approx. 250 in the U.S. and 3,000 worldwide) genetic disorder that prevents individuals from going outdoors in daylight. Any UV light, including florescent lighting, causes severe burns and eventually skin and eye cancer. The majority of those with XP do not live past the age of 20.
XP children and their families will travel to Yankee Stadium from Camp Sundown on Thursday evening, arriving after sunset to watch the remainder of the game from a party suite. Immediately after the last pitch, the field will be transformed into a massive open-air carnival, with music, food, and children's entertainers. XP campers and their families, along with Yankees players and their families, will then take over the field. The fun continues until approximately 4:00 a.m., when the XP families must re-board their buses in order to make it back to camp before daybreak.
Yankees Manager Joe Girardi, Jorge Posada, A.J. Burnett, Alfredo Aceves, Assistant Trainer Steve Donahue, Brett Gardner, Bullpen Coach Mike Harkey, and Cody Ransom will take part in the event.THE STORY OF CAMP SUNDOWN:
For 17-year-old Katie Mahar, there is nothing in the world worse than a beautiful summer's day. Along with approximately 250 other Americans, Katie suffers from Xeroderma Pigmentosum (XP), a rare genetic disease which causes the body to be unable to repair cells damaged by UV light. DNA damage to those with XP is cumulative and irreversible, leading to a 2,000-fold increased risk of skin cancer, pre-cancerous tumors, eye tumors and mouth tumors. Those with XP usually die from malignant melanoma or squamous cell carcinoma, and many go blind prior to reaching that point.
The only way to manage the condition is to prevent any UV light whatsoever from reaching the patient's skin. In practical terms, it means rarely, if ever, leaving the house in the daytime, and only when literally covered from head to toe by UV-filtering clothing, sunscreen and sunglasses.
In 1996, Katie's parents, Caren and Dan Mahar, took it upon themselves to create Camp Sundown - a year-round night camp, offering sun-sensitive children and their families a way to socialize in a physically safe environment. Prior to that time, Caren had launched the XP Society, which has since become a leading worldwide resource and support forum for individuals and families facing the disease.
Operating first as a retreat in Poughkeepsie, N.Y., the permanent Camp Sundown Retreat House was built in 2003 in Craryville, N.Y., approximately two hours north of New York City by car. It is a place where the traditional camp schedule is turned on its head, as children count down the minutes until the sun sets before going outside, then hurry back to the safety of their bunks before the crack of dawn. For all the campers, their stay marks the only time in their lives where they are just like everyone else.
Despite its invaluable effort in bringing joy to some of the world's most fragile children, Camp Sundown struggles to fulfill its mission. Because so few people are familiar with XP, there is little public support - either financial or social - for these brave children and families who, by necessity, cherish the night.TIMING OF EVENT
Approx. 8:30 p.m.: Camp Sundown arrives via bus. Group is brought to suite.
Before end of game: Kids are brought downstairs for potential "high fives" in the event of a Yankees win.
Immediately after last pitch: Carnival begins. All entertainers march in from center field. Food rolls in. Children and families, along with players and their families go on the field.
Approx 4:00 a.m.: Camp Sundown boards buses to return to their camp.
***PLEASE NOTE THERE ARE ELEMENTS OF SURPRISE TO EACH STORY***
Please visit the XP Society's Camp Sundown Web page at www.xps.org/campsundown.htm.FOLLOW THE YANKEES HOPE WEEK - AND GET ADDITIONAL TEAM INFORMATION - ON TWITTER:
Please follow #yankeespr.ABOUT HOPE WEEK:
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This story was not subject to the approval of Major League Baseball or its clubs.
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