Xeroderma Pigmentosum Society
A night camp for children with life-threatening sun sensitivity
Living Life When You're Allergic To The Sun
April 1, 2015
What is life like for those allergic to sunshine? Director Duy Linh Tu sheds light on this rare, crippling allergy through his documentary "Daylight Fading." We talk to Tu and a family dealing with this condition.
Sunlight Allergies May Affect up to 20 Percent of the World's Population
April 3, 2013
After just a few moments in the sun, Chelsey Madore knows a field of itchy red bumps will spread across her neck, chest, forearms and hands. Sometimes she gets a headache. And sometimes the rash on her hands is so severe it erupts into angry, pus-filled blisters.
"I can't stay out in the sun for more than 10 minutes at a time without having a reaction," she said. "It's hard not to feel like a vampire."
Madore, a makeup artist who lives in San Diego, Calif., has an allergy to the sun called polymorphous light eruption -- PMLE -- a condition that's estimated to affect 5 to 20 percent of the global population.
Two Summer Camps Help Kids with Disabilities
by MELISSA ESPOSITO, HUDSON VALLEY MAGAZINE
Those who have spent their childhood summers away at camp often have nostalgic memories of hikes and camp-outs, arts and crafts, and lakeside fun. For children with special needs, however, these simple activities can seem entirely out of reach. But thanks to the efforts of two Valley organizations, summer fun is no longer limited for kids with two different disorders.
It’s hard to imagine summer camp without sunshine, but for children with xeroderma pigmentosum (XP) or porphyria — two genetic conditions that cause severe injuries from UV rays — even the smallest amount of sunlight can be dangerous. At Camp Sundown in Craryville, children with these diseases can enjoy a week of swimming, arts and crafts, fishing, field trips, and most importantly, friendships with people just like them.
New York Yankees host Camp Sundown during HOPE week
August 22, 2010
by TIM FARRELL, THE STAR-LEDGER
The New York Yankees continued their HOPE Week (Helping Others Persevere and Excel) on Thursday by hosting a group of kids from Camp Sundown and the XP Society, which supports children who have Xeroderma Pigmentosum, a rare genetic disorder that prevents individuals from going outdoors in any daylight.
Any UV light, including florescent lighting can cause sever burns and eventually skin and eye cancer. The kids got to watch the game and then have a carnival on the field with some of the Yankees players coaches including Joe Girardi, Jorge Posada, Alfredo Aceves, Brian Cashman and others. (Video by Tim Farrell/The Star-Ledger)
The kids come out at night
July 23, 2013
by CLAIRE HUGHES, TIMES UNION
By dusk, the clapping and cheering in the camp dining room had risen to a joyful, yet earsplitting, crescendo. Volunteers, friends and well-wishers had joined the already full assembly of campers and families to watch a basketball demonstration by a Connecticut high school team.
Not a single parent suggested the kids use their inside voices. Or go outside. Not until it was completely dark.
Then the front doors opened wide for the first time since the night before, and the children – victims of skin disorders that make sunlight dangerous — ran.
Yankees 'open their hearts' during HOPE Week at stadium
Saturday, July 27, 2009
by MICHAEL MCCARTHY, USA TODAY
NEW YORK — As part of their HOPE Week celebration, the New York Yankees hosted a group from Camp Sundown and the XP Society at Yankee Stadium on Thursday night. What made these children of the dark special is they could visit only at night.
The campers suffer from xeroderma pigmentosum (XP), a rare genetic disease that requires them to not be exposed to sunlight. Unable to repair cells damaged by UV light, XP sufferers get blisters, third-degree burns and premature aging of their skin, lips, eyes and mouth. There is no cure and many of them die young from malignant melanoma or squamous cell carcinoma.
YANKEES HELP CAMP BRIGHTEN SPIRITS OF LIGHT-SENSITIVE KIDS
July 26, 2009
by STEVE SERBY, NEW YORK POST
IT IS a little after 11 p.m. Friday night, which means Katie Mahar, 15, could go outside and play if she so desired. It is some 19 hours after Yankee Stadium was magically transformed into her field of dreams, when the New York Yankees shined the brightest rays of hope possible into the hearts of mostly young children who are forced to live in darkness.
Caren Mahar has five children. Katie is the one afflicted with Xeroderma Pigmentosum (XP), a rare, insidious genetic disorder that causes the body to be unable to repair cells damaged by ultraviolet light. She and her husband, Dan, 14 years ago co-founded Camp Sundown, a year-round night camp for sun-sensitive children and their families, in Craryville, N.Y.
Brightening their night at Yankee Stadium
Updated July 26, 2009
by BARBARA BARKER, NEWSDAY
It was 2 in the morning, and a soft, warm rain fell on the outfield of Yankee Stadium. The wet weather lent an almost surreal sheen to the after-hours on-the-field carnival that started late Thursday night after the Yankees' win over Oakland.
While most of the Bronx slept, the kids of Camp Sundown played in the rain until 4 a.m. with select Yankees players. Some took batting practice thrown by A.J. Burnett. Others watched a magician perform card tricks with Jose Molina. One camper, Meghan Fruchter of East Meadow, posed with Jorge Posada as her mother took pictures with her phone.
A Night Out at Yankee Stadium
NEW YORK, July 25, 2009
by ANDREA CANNING and SIDNEY WRIGHT IV, ABC NEWS
When the sun goes down in New York, the day is just beginning for a group of one-of-a-kind campers. They're all members of Camp Sundown, where day is night, and night is day. Unlike typical camps, everything from catching bugs to playing baseball is done in the dark.
Caren and Dan Mahar started Camp Sundown in 1996. The camp caters to children living with a rare genetic skin disorder called Xeroderma Pigmentosum, or XP, in which any exposure to ultraviolet rays causes third-degree burns and can lead to cancer. The campers range in age from 6 to 32, with most in the 13 to 17 age range.
Yankees reach out to Camp Sundown and the XP Society
July 22, 2009
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.
Kids with rare UV affliction will have day out of the sun at Yankee Stadium
Saturday, July 18, 2009
by WAYNE COFFEY, NEW YORK DAILY NEWS
CRARYVILLE, N.Y. - As the last lethal rays of daylight cede to darkness, you can feel the energy and excitement building here, giving this tiny Hudson Valley hamlet (pop. 1,454) the aura of a tree-clad theme park.
Chris Soto, a beefy 16-year-old from Brooklyn with baggy plaid shorts and a crooked Mets hat, is about to hop on a bus with his friends to get an ice cream cone. Katie Mahar, an ebullient senior at Taconic Hills High School, is part of the entourage heading to a local farm to see lambs and goats and pigs.
Hudson Journal; Where Daylight's a Risk, Dark Is a Time to Shine
July 21, 2002
by LISA FODERARO, NEW YORK TIMES
HUDSON, N.Y., July 19— As wisps of cloud drifted across a half moon, 9-year-old Mary Begg, in helmet and harness, climbed the 10 rungs of a ladder toward the lowest foot grips on a soaring climbing wall.
Hesitating a moment, Mary, a shy girl with owlish glasses, reached up and touched a toehold with her hand before rappelling off the wall, eliciting a cheer from her fellow campers below.
As youngsters in countless other camps were singing their final song of the night and tucking themselves into bunk beds, the young (and not so young) participants in Camp Sundown here were just starting their day.
The camp is intended to give a high-energy, outdoor camp experience to those with a rare genetic disorder, xeroderma pigmentosum, which makes them unable to tolerate ultraviolet light. And so activities like this one, on a rugged adventure course at Columbia-Greene Community College, take place at night, when the campers can venture safely outside.
September 16, 2001
by LAWRENCE OSBORNE, NEW YORK TIMES
Night has fallen at last. The moths have come out, the cicadas are starting to hum -- and the air is filled with the jittery laughter of children. The kids who have gathered here are febrile with anticipation: they have been waiting all day for the sun to set, waiting for the moment when they can play together in the dark. Twilight shadows cause these scattering figures to blur as they assemble around a trampoline. A 9-year-old girl named Katie Mahar clambers onto the taut fabric; dimly illuminated by crisscrossing shadows, she rises and falls in the air, looking like an antic ghost. She wears a T-shirt with a curious inscription: ''I'm an X.P. star! We've got the sun on the run!'' All around Katie, beams of flashlights swivel and cross. ''Look,'' she shouts at her companions, ''I'm going to do a double somersault with my eyes shut!''
Into the Night
August 24, 1998
by SAMANTHA MILLER, PEOPLE
Under a full moon on a warm July night, the children at Camp Sundown are learning to fish in the creek near their cabins. Volunteer counselor Jim Halla, a local angler, gently unhooks 3-year-old Drew Feagin's catch—a baby bluegill barely bigger than the preschooler's palm—and places it in the boy's hands. "Go ahead, throw him back in," Halla prompts. But Drew grins and yells out another idea: "Let's eat 'em!" The fish is of course granted its getaway as Drew's grandmother Linda leads the flashlight-toting campers in a round of applause.
Isn't it a little past a 3-year-old's bedtime? Not at Camp Sundown. Like the other 10 children at the camp in Standfordville, N.Y., this week, Drew has xeroderma pigmentosum (XP), a rare genetic disorder that makes his skin hypersensitive to ultraviolet rays. Even short exposure to sunlight can cause severe burns, which almost inevitably lead to the skin or eye cancer that can kill many XP sufferers before their 30th birthdays.
A Family Turns Night Into Day for a Child With a Rare Skin Disease
May 14, 1997
by MONTE WILLIAMS, NEW YORK TIMES
LAGRANGE, N.Y.— Caren and Dan Mahar thought about sending their 5-year-old daughter, Katie, to school once a week this fall, but decided against it. It would have meant her having to wear a sleeping bag over her head while she was being transported and finding a windowless room where she could play and learn.
A rare genetic disease, xeroderma pigmentosum, has made Katie a prisoner of the dark. The sun, even the slightest bit, is her enemy, causing severe burns, blistering and, almost inevitably, skin cancer.
''Basically, the school nurse, principal and special education teacher kept saying, 'It all depends on how much risk you're willing to take,' '' Mrs. Mahar recalled. ''I thought about it, and I'm not willing to take any risk. We've kept this child in the house for two and a half years. Being with other children is important, but not worth risking her health.''