Welcome to The Xeroderma Pigmentosum (XP) Society
Learn about xeroderma pigmentosum (XP) , a rare genetic disease, and about the Xeroderma Pigmentosum Society (XPS), dedicated to helping XP families, patients and those afflicted with similar life-threatening sun-sensitivity disorders.
The XP Society is a 501(c)(3) not-for-profit charitable organization founded in 1995 by Caren and Dan Mahar, whose youngest daughter, Katie, has xeroderma pigmentosum. The organization is a means to provide the XP family support and information needed to cope daily with XP. The XP Society has always been international in its scope and support, since its beginning in 1995.
The XP Society offers information, support, advocacy, and protection to the XP family, patient and caregiver while promoting research for a cure.
Disclaimer: These pages are developed by XP families for information and support
and should never replace a medical visit or recommendation
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Xeroderma Pigmentosum Society Board of Directors
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CAMP SUNDOWN 2012
Every day was a holiday at Camp Sundown this year and families worked hard to create amazing events such as Birthdays, Halloween, Christmas, Easter, New Year"s Eve. We had an incredible giant screen movie night on the lawn, a New Year's eve gala, a Christmas play with a visit from Santa, Halloween including trick or treating, Valentine's day with a chocolate fountain, and a real Pirate Day! We celebrated Thanksgiving feast with our friends from Patterson Rotary, the annual carnival at Campbell Hall including helicopter, magician/clown, giant fireman, robot fire truck, jumping houses, race and classic cars, crafts, exhibits, fine food, the excitement of standing in line for the ice cream truck, excavation tour, and the anticipated baseball game.
We visited the caves at Howe caverns and mined for gems, sang Karaoke under the stars, had a dance party with a DJ, and were treated to a REAL Barbeque by BBQPittmaster John Markus with Larry Martino. We rode horseback at Tim Smith's riding school and enjoyed the wet and wonderful fireman's games from the Churchtown Fire Co. The Moonlight Mamas created a new song and a Camp Sundown Song was born. Moonlite the clown celebrated her tenth birthday at Camp Sundown amongst many of our Camp Sundown Clown friends. Rosi amd Daniele, our artists in residence from Italy, were sonsored by the MUS-E International foundation and they provided several fun photo art workshops as well as a very enjoyable bonus of Wake Up with Rosi Yoga. We sang and danced to Karaoke under the stars with Keith and had a DJ dance party with DJ Terry.
The Moonlight Mamas started the Camp Sundown reading group and were given The Morning Tree donated by Austin Reams and Dirty Deeds donated by Suzanne and Jerome Preisler. Start early for next year's discussions!
Every camper was thoroughly checked for skin problems by the wonderful staff of Dr Gregory, who also answered many questions about camper's conditions. Dr Malak presented an enjoyable workshop on Natural Sunscreens like Broccoli, Dark Chocolate, Red Wine and Tomatoes. For the first time we had a presenter from the department of Social Services. Our dear friend Erika answered questions about social services available to patients including SSI, medicaid and medicare, reminding us that since XP and many camper conditions are listed in the social security listing of "eligible" disabling conditions, social security offices in your county may be the first place to start in your search for help and answers regarding insurance and longterm care.
New friends Almut and Charlotte from Germany did another photography workshop that helped us understand better the developing of photos as we created our own light/dark images in a real dark room. Special thanks to Laura, Meghan, Lisa, Chris and Brad for volunteering their time to create a safe and fun envirmonment;. Laura and Meghan for their wonderful skit on Hogwarts as Camp Sundown and Lord Voltimort as the evil (UV) light lord. Art with Angie is always a hit and we are glad she and her family were able to join us during both sessions this year! A new house was added to HoBo Row, and made beautiful by the coloring of many hands.We learned self-defense in workshops by Billy Baldwin and Keith Borne. We enjoyed outdoor night games and learned to scuba dive with Scuba Joe and Jim Quinn.
We thanked our special families who not only donated items like bedding, rugs, decorations to make each room a little homier for every future camper, but also those who took the extra step to do fundraising efforts on their own. Thanks to the families of Mackenzie V, Hannah, Kevin, Meghan, Tara, Mackenzie B., Mack, Brady, the Camp Sundown Clowns, Jessica and the Lish family for a Hulathon, our camp Tshirts, the first week show and the cupcake decorating. Thanks to Jen and Linda for taking charge of the kitchen, Joan and Brad for their continued help since our first camp, and to our volunteer friends from the Bruderhoff. Also we thank Alyson and Kathy, Jackie and Lorraine for coming back year after to year to help things run smoothly! It is sad to see it end so quickly, but such a perfect year in meeting new families and renewing old friendships! Thank you donors, sponsors, volunteers, families and campers for an amazing summer!
Please feel free to send photos or post to the Camp Sundown Facebook page!
In Loving Memory:
Elaine Toczydlowski, longtime volunteer, entered Heaven on June 21, 2012. We thank her family during this sad time for thinking of the XP Society in suggesting donations be made to Camp Sundown in lieu of flowers. For more information, click here.
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Comedy Night/Silent Auction
was a huge success in April, raising over $7000 for Camp Sundown. Special thanks to the Meade and Snyder families for organizing and running the event and to the Otterkill Engine Company for location, food, beverages and music. Thanks to donors of items for the auction, guests and comedians Danny Mahar, Brett Sidell and MaryKate Wise for an all around fun night!
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KUDOS to
P.S. 26 Student Council, Jessica Lish, and the students and staff for a successful Hula-Hoop- a- Thon raising $500 for Camp Sundown in February!
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NOVEL BENEFITS CAMP SUNDOWN
"Under a fig tree, in the blistering morning sun of Galilee, a centurion kills for a sacred scroll.
Did Jesus write a gospel in his own hand? His
disciples say so, and one of their own has stolen it.
Days after the crucifixion, a centurion, Ras, is
tasked by the disciples of Jesus to find the missing
scroll of the man from Nazareth who would be
called the Christ.
Although sunlight can kill him, Ras, a man of war,
searches from the wastelands of Galilee and
Judea to the secret dungeons of the temple in
Jerusalem.
But Ras has been deceived. People are not who
they seem to be. A hidden truth is revealed under
the morning tree at the tip of a blade: to serve
Jesus with violence is to destroy his teaching . . "
The XP Society is grateful to author Austin Reams for supporting Camp Sundown and the XP Society. For every online purchase of the Morning Tree through this site, Austin Reams will donate $5.00 to the XP Society!
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Kudos
to the St Marys' Knights of Columbus Council # 4065 in Fishkill NY for their long-running support of Camp Sundown!
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Zumba-thon
Friday, Jan. 13
was a huge success raising over $500!
Special thanks to Cindy and Danielle for
organizing and hosting this wonderful fundraiser!
Thanks also to Edible Arrangements of
IBM Rd Poughkeepsie for a delightful
arrangement for the event!
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Citrullo Films International presented a documentary on XP and Camp Sundown at the Rome International Film Festival in Italy on November 3. The
Film Festival, in its sixth year, is the coveted venue for film makers of all genres. Stiff competition abounds for entrants and many celebrities attend. Selection is elite.
Three years of professional filming, creativity and editing went into capturing the delight of children with a rare disease known as xeroderma pigmentosum (XP) at the special light-protected world of Camp Sundown. Children with XP lack the ability to repair damage done to their cells by sunlight and other forms of ultraviolet radiation making them 2000-4000x more susceptible to skin and eye cancers than the general population. Camp Sundown provides a UV-safe haven for afflicted children and their families, bringing people together to share support, information, recreation and friendship under the safety of the stars.
We are thrilled to have been able to collaborate on this extremely creative undertaking. For a short preview of this project The Dark Side of the Sun, please click here.
Variety Magazine: "Italian Film makers find US Inspiration"
"Power of Film Brings awareness of Rare Disease", William Lambers
Register Star, October 28, 2011, "On Italian Screens"
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for the perpetuity of Camp Sundown...
HURRICANE IRENE/LEE UPDATE : Special thanks to the NY Yankees, the Dyson Foundation, the Newman's Own Foundation and several private donations, repairs have begun.
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Camp Sundown 2011
Thanks to all who gave of their time, talent, gifts and monetary contributions to make this another successful year for Camp Sundown families!
Slideshow of more photos here!
Look for more great photos by Elisabeth Bernstein here.
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Kudos to:
M-W Group Fifth Annual Day in the Shade Golf tournament in September was a great success!
The Preusser Family in Pennsylvania, their family, friends, St Matthews Church and Community for a
fun and successful Chinese Auction that will become and annual event!
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Special Thanks to the Hudson Valley Chapter of the Ferrari Club of America for their support of Camp Sundown!
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Camp Sundown Classic 2011
Thank you to Churchtown Fire Company, JJRT Enterprises, Toyota of Kinderhook, Copake Country Club and Colarusso Sand and Gravel for a wonderful day of golf, fine food, great prizes, music and terrific people!
KUDOS to the Criminal Justice Club at Co-Greene Community College
Students and staff raise over $1000 for Camp Sundown in a Pie-a-Professor event on April 21.
For the story and pictures click here..
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Shopping for Schoolbooks and supplies?
Birthday and Holiday gifts?
Buying Books? Electronics? Gifts? Just about anything? Buy it at Amazon.com
through this link and a percentage of your total price is donated to the XP Society at no extra cost to you
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*Tell 10 new people about XP and how they can help.
*Volunteer your time or talents at Camp Sundown (interest surveys available top right of this page) or any of our upcoming events
*Run your own fundraiser! Let us know and we will help you publicize your event through our website and email lists.
Please email us now (xps@xps.org) on how you would like to help.
*Donate: Securely online through Network for Good or PayPal or mail a contribution to: XP Society/437 Snydertown Rd/Craryville, NY 12521 It costs approximately $400 for one camper and his/her family to enjoy a week of Camp Sundown. $200 buys a pizza party for camp $100 purchases sunscreen, glasses, hat and gloves to protect one camper from UV radiation.
Make a commitment to make a difference today. You are always a special star in our eyes!
This is something we all can do!
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Recommended Reading:
Little Prisoner of Light, NY Times
Where Daylight's a Risk, Dark is a Time to Shine, NY Times
Into The Night, People Magazine
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Thank You New York Yankees!
The New York Yankees hosted the XP Society and Camp Sundown as part of its HOPE Week 2009, letting campers enjoy a winning game from an exclusive 'press-box' suite set with full refreshments and outstanding seats. After the game, campers "high-fived" the team out on the field before starting a first ever "sleepover" at the stadium. Overflowing goodie bags with Yankee memorabilia, HOPE week T-shirts and buttons, Yankee hats and sunscreen were given to each camper. There was no sleeping though as the field was full of players welcoming campers and their families in center field, singing songs, throwing balls and signing autographs all around. A carnival surrounded the campers with cotton candy and popcorn machines, hotdog vending cart, name creations, caricature, magic show, bouncy bounce castle and frisbee playing. Before leaving, a full buffet of picnic treats, drinks and desserts were offered to the campers leaving the stadium field at 3:30 am. The Yankees also generously sponsored the entire October Week of Camp Sundown 2009 with a $10,000 contribution. Thank you Yankees! Photos and more to follow . Meanwhile, check these links for the story:
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Crystal Star Award
Congratulations Thomas D Mahar, Jr in receiving the first Crystal Star Award for lifetime service to the XP Society! It is a true honor and privilege to know you! Special thanks to Mike Snyder, our MC, and the amazing music of the TooBlue Music Band. Need music for your event? Check out their homepage at www.TooBlueMusic.com
Crystal Star Award #2 given to Michael Snyder and the Otterkill Engine Company at an elegant dinner at the Trotter's Museum in Goshen NY in October 2010.
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Giving:
Sponsor a family for Camp Sundown 2012 for $350
Shop our website
Employee Workplace Donations
Employers: contact us on how your company and employees can help through work place contributions.Employees: we participate in the SEFA (State Employee Federated Appeal for NYS employees) # 61-00162, CFC (Combined Federal Campaign for government employees), and United Way (by county). Many employers also offer a wonderful matching or even double matching program to help support giving by employees. Ask if yours does! Our Federal ID # for charitable donations is 14-1779906. Thank you!
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Brad Paisley awarded Male Vocalist of the Year 2009/
Entertainer of the Year 2010!
Once again, the Stars Shine Bright for Camp Sundown as famous country music star Brad Paisley and his beautiful actress wife Kimberly Williams Paisley show their support with a $5,000 gift for Camp Sundown. Despite the struggling economic times, the couple continue their generosity for children with xeroderma pigmentosum through Camp Sundown, a unique to the world summer night program run by the XP Society. Founded in 1996, Camp Sundown has been an international haven for children suffering all light-sensitivity disorders and is run entirely on donations of money, time, talent and meals.
The Paisleys first contacted the XP Society founders Dan and Caren Mahar in 2004 after being touched by a news segment about the disorder. Since then, Camp Sundown has become one of the causes the Paisleys support. In addition to monetary donations, Kimberly Williams-Paisley produced and starred in an award-winning short film, SHADE, about a young woman living with XP.In 2006, the Paisleys visited the camp facility in Craryville, NY, surprising campers late at night after a concert Brad performed in Bethel, NY.
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Camp Sundown is a unique to the world night program, XP family retreat and medical conference rolled in one. Camp Sundown is held each July, August and October in Craryville, NY. The XP Society provides tinted transportation to and from nearby airports and train stations as well as to our activities during camp.
All activities, lodging, meals and supplies at Camp Sundown are provided at no cost to the camper and one guardian thanks to monetary donations and gifts of food, time and talent.
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PODCAST with Dr. James Cleaver, UCSF
Click here for radio interview
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AWAKE
This novel by Elizabeth Graver, while fiction, accurately portrays some of the emotional aspects a mother whose child has XP goes through as she develops while exploring a night camp for children with XP. Your order, if placed here, helps the XP Society.Elizabeth Graver is a New York Times Best-selling author and professor at a Boston Mass University.
SHADE Wins an Award!
The short film Shade , directed by, and starring, Kimberly Williams-Paisley with original music by Brad Paisley was first screened at the 12th annual Sedona Film Festival in Arizona winning an award for Directors' Choice Outstanding Directing/Acting in February. We just learned from Kim that the 14-minute piece shown in the "Truly Moving Picture" category at the Heartland Festival in Indianapolis late October, won the Crystal Heart Award for the short film group. Congratulations Kim!
Kim tells us that she was inspired to create her film after seeing a segment on CNN about our XP children. Her film relates to a young woman living with XP, and the choices she has made with her life. Her depiction of "Laura", is truly inspirational, heartbreaking, and amazingly accurate. She is joined by co-star Patrick Dempsey, as Laura's husband. Mr. Dempsey echoes Kim's performance and goals of accuracy, with a spectacular performance of his own.
We are truly grateful to Kimberly Williams-Paisley, Patrick Dempsey, and all the many people behind the scenes who have worked countless hours to make this film a reality. Perhaps 13 year old Katie Mahar summed it up best: After viewing the film, through tears she whispered, "Finally! Someone understands."
Copies of Shade are available by writing the XP Society and enclosing a SASE (self addressed stamped envelope) large enough for a DVD.
Cleaver given Career Award By ASA.
Our beloved scientific advisor James Cleaver of UCSF was awarded the prestigious Career Award for his years of study at the Cancer Association gala event in New York City on October 24, 2006.
Honored for his entire career, Jim was presented with this award by Sam Donaldson (ABC News Correspondent ) and actress Rosemary Harris at the dinner hosted in the exclusive University Club in Manhattan. Congratulations Jim on a well deserved honor!
The XP Society is the international authority for XP (Xeroderma Pigmentosum) family support and information to assist in making intelligent decisions in the caregiving of XP family members.
This website updated May 1, 2012.