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
Please join us in our upcoming events:
XP Golf Classic September 14 11am sign-in
Copake Country Club, Copake, NY
Camp Sundown Yankee Version October 9-12 (contact for application)
NYC Walk in Central Park West October 17 8pm
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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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In loving memory of
Anthony Mustari Sr.
1919 - 2009
The XP Society, and its founders Dan and Caren Mahar wish
to extend sincerest gratitude to the family of Anthony
Mustari, Sr. for selecting XPS to be its charity of choice
for memorial donations made in his honor and memory.
If this name sounds familiar, it is because we have another
notice on this page for his wife Mary Mustari.
When Mary passed in March, it was only natural that Anthony
would want to follow. He did so way too soon for those who knew
and loved him, however, not soon enough for him.
A true World War II hero, he was an Army medic in the Normandy
Invasion, Battle of the Bulge, and in the crossing of the Rhine River.
Like so many other brave men and women today, Anthony
truly was not afraid to die for the country he so loved.
Anthony received five Battle Stars and many other Army decorations
for his valiant service. The decoration he was most proud of however,
was the one he held in his hand, and what stood by his side.
His constant companion and wife, Mary. Theirs was a love story
that played on Earth's stage for 62 years, without a final act in the program.
They just simply made a quiet exit, and went home.
Thank you Aunt Mary, Uncle Tony, and your family for remembering our
special children.
Make a donation in honor of Anthony Mustari, Sr. here
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. 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 "Showcase 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 week 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. Thank you to all the incredible volunteers, donors and sponsors that gave Camp Sundown and 31 XP families another successful year! Photos courtesy of Bryce Stone.
Ways you can help today :
*Support one of our events as a sponsor, walker, golfer, advertiser, donor of gifts:
September 14, Golf Tournament Copake Country Club, Copake, NY
October 17, Central Park Walk for XP, New York City
*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 2009 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.
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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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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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In Loving Memory of:
Mary R. Mustari
1920 – 2009
The XP Society, its founders Caren and Dan Mahar, wish to extend sincere sympathy and gratitude to the family of Mary R. Mustari, for selecting the Society as the receiver of memorial donations in her name. Mary was Dan Mahar’s aunt.
My aunt was born in Italy, and like most of our families at one point or another, came to the U.S. In her case, I believe it was in 1929. As I have tried to come to terms with our personal loss, the thought also crossed my mind that the whole country suffered a loss this week. I’d like to take advantage of the “president” title and explain this for just a moment.
It seems that when I was growing up, there was a breed of people that loved this country as much as the home they left behind. You could walk down the street, whether rural or city, and know your neighbors. You cared for them when they were sick, even when they did block your driveway. Very often your extended family lived only a few blocks away, or even just a few doors. It was very common to see the American flag posted proudly, and on special days, the flags of both countries would be flown. If you misbehaved or spoke badly as a child in school, you didn’t have to worry too much about the school’s discipline, but you can bet, shortly after you got home………
The fabric of these people, Italian just being a small percentage, were proud of their houses, their culture, their inner connection with our creator, and their unwavering sense of what is right and what is wrong. They built our houses of worship and we let them decay. They went without to pay the mortgage, and now we swipe our cards as often as they would be grateful just to have their family and their little piece of this great country.
Perhaps the answer to all of the economic woes we’re suffering today, lie in the generations that came before us. Perhaps today we lost a part of that answer, when I said goodbye to Aunt Mary. Perhaps it’s time to go back in time. Our leaders of the past are slipping away quickly. Maybe it’s time to hear how it “used to be” once more, and learn, while there are still some leaders left to teach us.
To our readers, thank you for letting me step out of the XP box and ramble. To Mary Mustari and her family, thank you for your kindness toward our XP children. Safe trip home, Aunt Mary, if it’s anything like the one you once had here, it must be heaven.
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XP Global Appeal:
Thank you to those who contributed! Six boxes of supplies from sunscreen, glasses, hats, toys, medical supplies, window tinting and clothing were sent to Guatemala and Honduras in July. 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 August 16, 2009.