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 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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In Loving Memory of
Kevin Charles Swinney
January 12, 2010
Every now and then, we meet people who give us much more inspiration than they ever receive. At Camp Sundown, that person was Kevin.
Traveling from his home in Alabama each summer, Kevin would bring with him his own unique ability, through compassion and dignity, to make us each grateful to be alive and happy to be in his company. Born on April 22, 1974, Kevin was often our oldest camper, but always our youngest at heart.
His energy, enthusiasm and drive for life were matched only by his unyielding devotion to our Creator. Kevin was proud of his faith and it showed in every facet of his life. In addition to being a loveable counselor at Camp, he was a poignant speaker as shown by this interview for the Citrullo International film on XP and Camp Sundown coming this fall. (film clip)
Kevin loved making people happy and was very interested in becoming a professional clown soon. Our Camp Sundown clowns enjoyed his help on our weekly "shows" and also mentoring Kevin in technique and clown training opportunities.
An avid baseball fan, Kevin’s dreams came true this past summer thanks to Jason Zillo and the entire N.Y. Yankees organization who, as Kevin said, gave him the best summer of his life in the Camp Sundown night at the new Yankee Stadium . (Read about Jason's Hope Week initiative here.) (Film Clip here)
Although we are very saddened to lose Kevin, the universe gained another bright star to guide us and Heaven gained a new angel to watch over our XP children, as Kevin himself did at Camp. Until we see you again, Kevin, please know we cherish the memory and the wonderful chance we had to know you.
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Coming this Fall!
Citrullo Films International will present a documentary on XP and Camp Sundown. We are thrilled to have been able to collaborate on this extremely creative undertaking which covers over a year of filming and editing. For a short preview of this project The Dark Side of the Sun, please click here.
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Back to school Book Shopping?
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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Camp Sundown 2010
Applications now available for July and August 2010 sessions
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A sad farewell to Lenis, our young friend from EL Salvador, who fought valiantly against cancers too numerous and vicious. With the help of many friends and family, Lenis saw the best doctors in trying to find relief of the constant pain she faced. Lenis left this world at 1am Christmas morning.
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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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Camp Sundown 2009
Camp Sundown has finished its fourteenth year of summer!
Under the full July moon, Camp Sundown 2009 began with a bang! We are having a lot of fun with fire flies and firehoses, learning the maranga, visiting goats and sheep and a medieval maker, carnivals and icecream shops, Swimming on the Twelves (midnight and noon each day) including lessons for the younger ones and the funny watermelon toss, soccer, volleyball and horseback riding. We gt to sit on and be awed by antique and newer racing bikes and cars in a private museum. Along with being in a documentary about XP, our campers filmed, edited and produced their own documentaries they aired for all. Our clowns entertained, Moonlite bringing in new friends, teaching new skills in fun and games and our doctors shared insight into nutrition assistance as well as providing vital skin checks for all campers. Our caring derm team demonstrated mineral makeup from Color Science, showing us how to put our best face forward.Camp fires ended our evenings with s'mores and song and games by Aric. Each session ended with a wonderful show of talent as we "Showcased Our Stars". Campers made backpacks and lighthouses, birdhouses and created artful cubes and t-shirts with Angie and howled with the owls and coyotes under the beautiful night stars.We ended the summer session with a trip to Yankee Stadium where campers and their families were treated like royalty for an evening watching the game from a private suite, going centerfield with the players for fun, games, wonderful food and generous gifts. Our October Camp Session saw carving of pumpkins and costume making, we created beautiful painted wooden boxes to give as gifts and decorated cookies. Our Harvest party included traditional games like apple dunking and worms and eye ball search. Thank you to all the incredible volunteers, donors and sponsors that gave Camp Sundown and 41 XP families another successful year! Photos courtesy of Bryce Stone.
Ways you can help today :
*Tell 10 new people about XP and how they can help.
*Volunteer your time or talents at Camp Sundown (applications available top right of this page)
*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.
Make a commitment to make a difference today. You are always a special star in our eyes!
This is something we all can do!
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
Giving:
Want to give a gift of meaning? Sponsor a family to camp for 2010 or make a gift in honor of a loved one.
Shop for friends and family through this website and XPS will get a small percentage of the shop's profits.
(See top right of this page on ways to help.)
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) , 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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Stars Above
They were here for such a short time, but they were the light of their families' lives. Let them be the stars that shine bright in the night and let them run and play under Heaven's sun as they could not here on earth.
We sadly say goodbye to Leanndra and Michele, Kevin and Lenis.
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Brad Paisley awarded Male Vocalist of the Year at the 2009
Academy of Country Music 44th Annual Awards on April 5th!
Special thanks to those of you who voted for him for Entertainer of the Year.
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 $10,000 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 1995, 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.
Congratulations Brad and Kim on the birth of their new baby son!
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XP Global Appeal:
Thank you to those who contributed! Seventy families in eight separate countries were helped this year with gifts of sunscreen, glasses, hats, toys, medical supplies, window tinting and clothing. Boxes went out on October 26 in conjunction with the National Make a Difference Day with donations from patients, families and others. Monetary donations are also needed and welcome. See Global XP Appeal for ways to donate items. Thank you again for your support!
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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 page updated January 14, 2010