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 and patient and caregivers 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.
**Happy Spring**
With a new spring comes the motivation and energy to do more and do better. 2008 is no exception for the XP Society! With doors opening in science every day, new families discovered every week, the need for services and research is greater than ever. Help us continue our goals and make 2008 the most progressive year ever!
Help us to REACH FOR THE STARS!
Donate Here to the
Concerned About the Bulb Ban of 2012?
May is National Melanoma/Skin Cancer Awareness Month...
and here for Free Skin Cancer Screenings
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.”
World Congress for Xeroderma Pigmentosum:
An XP Family Retreat/Medical Conference
Join us for a two day conference on everything you always wanted to know about XP, Ultraviolet light, protection, Research, Treatments. Thirteen professionals will share their expertise in this Unique Conference for XP Families, interested community members, students and doctors. CME credits will be available.
July 23-24, 2008 Poughkeepsie, NY call or email us
for brochure and information. There is no charge for family members and caregivers, nominal cost for students, physicians, community members.
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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 for a multitude of reasons, 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 the 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 meets 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
Camp Sundown 2008
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.
CAMP SUNDOWN July 2008 is filled for five straight sessions except for two openings for new families. Please call or email us if you are interested in attending the October 10-13 Session.
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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 university in Boston, Mass.
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 and production of Cancer Association at a 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 May 7, 2008