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.

Thank you Fox 23 News

for your coverage of our July session of Camp Sundown! View the story here to see Camp Sundown in action.

 

Camp Sundown was held for five sessions this summer including a special session for the third year in a row just for teens. We enjoyed horseback riding and swimming, arts and crafts and Wii Fit, Guitar Hero and carnivals, softball and volleyball games, campfires and clowns, makeup artistry and animal visits and many trips out. Thank you to our many donors, sponsors and volunteers for another perfect season! The First World Congress on XP, an XP family retreat and medical conference rolled in one, was held in Poughkeepsie NY at the Grand hotel where all families heard and learned from many experts on XP and related topics from genetics to ultraviolet, DNA repair to prevention and treatment, legal issues and ways to advocate for your own child. Stay tuned for next year's World Congress on XP in July 2009!

Camp Sundown October 2008

As summer wanes and fall approaches, we are not only ready for the cooler days and nights, but also for the Harvest Moon which shines bright and full and comes out much earlier than in the summer. We celebrate the ability to go outside earlier to play and enjoy our world with our special October Camp Sundown.

Spaces available for Our Harvest Camp Sundown, Apply for Oct 2008 Camp Sundown now!

 

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! Next shipments scheduled to go out in December. Monetary donations are also welcome. See Global XP Appeal for ways to donate items. Thank you again for your support!

 

 

Please join us in the Tenth Night Walk in Central Park

Saturday October 18th 8pm

For more information and registration, click here

 

Concerned About the Bulb Ban of 2012? Write us here

 

 

Stars Shine Bright for Camp Sundown

Country singer Brad Paisley and actress wife, Kimberly showed continuing support by donating $10,000 to Camp Sundown, a summer night program run by the XP Society. Founded in 1995 by the parents of a child with the rare disorder xeroderma pigmentosum, whose main symptoms include severe reactions to sunlight, Camp Sundown has been an international haven for children suffering all light-sensitivity disorders and is run entirely on donations.

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 even visited the camp facility in Craryville, NY, surprising campers late at night after a concert Brad performed in Bethel, NY. “They just showed up in a great big tour bus to hang out with our campers under the safety of the stars, stated Dan Mahar. “It was quite an amazing experience for us all.”

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New!

Online support for XP Families and

other UV sensitive people is back!

 

"Light Diversions"

When the XP Connection was closed, a hole was felt among many light sensitive people. Some found the support they were looking for through other online groups, but most felt left in the dark with no real way to reach the folks they have come to know and trust through our XP Connection.
Grab a cup of tea or java and sit down for a while. The XP online support has returned as "Light Diversions", a yahoo group that will meet in the evenings. Monitored on a rotating basis by UV sensitive patients or family members of people with severe light sensitivity, this is a volunteer arm of the XP Society, continuing our mission of providing the XP family support, information and promotion of a cure.
On occasion we will feature specialists to answer questions but we'll give you lots of notice for that!
Come join in!

To request membership, please write to cherie2xp@yahoo.com If you have had trouble getting in, please try again. Many members told us that our replies for acceptance ended in their "spam" folders.

 

Camp Sundown

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 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.

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PODCAST with Dr. James Cleaver, UCSF

  Click here for radio interview

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REMEMBERING AMANDA

September 28, 1989- June 23, 2007

There are only a few of us who knew Amanda to begin with. She and her mom were one of the eight original families that attended Camp Sundown our first year in 1996, and then again in 1997. After that, Amanda's declining health prohibited her travel abilities.

Amanda was one of the 20% of XP victims that suffer neurological complications. Indeed, hers were about the most challenging we have ever witnessed. When we knew her, she could walk with assistance and speak with certain sounds and hand gestures. Her mom knew every one of her emotions, and everything she was trying to say. I remember one evening at camp when Amanda didn't seem quite herself. I asked if she were feeling alright. Her mom said, "Oh, she's just angry at me because I told her she'd have to go to bed soon". Another night, Amanda was all smiles, and big hugs for everyone.....Her mom said, "Now she's just being a flirt".

I didn't know that Amanda's birthday was September 28th until recently. Now, I'll never forget it. That day is engraved on my wedding ring. The day Amanda was born, we were celebrating our 4th wedding anniversary. Caren and I had no clue then about XP, outside the fact that they were just two of the later letters in the alphabet. My, how things have changed.

It is, of course, with great sadness that I recall all the things Amanda had to do without. In all that sadness, though, a few other thoughts occurred to me. Amanda had no concept of money. Therefore, she was never bound by its temptations. She couldn't know corruption, greed, or jealousy.

Amanda couldn't know emotions like hate and mockery. She had no concept of war. She wouldn't know how to ridicule, although her mom tells me she often received it.

The thought finally occurred to me that Amanda lived a perfect life. She went home to our creator, as pure and as beautiful as the day he first gave her to her mother. If only the rest of us couldn't know what Amanda didn't.

Thank you immensely to those who contributed to the monument at Amanda's final resting place. Her mom is so grateful for the outpouring of love for Amanda and sends her thanks as well.

God bless you and your memory Amanda, and all the things you never knew.

Dan Mahar

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 3, 2008