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.
*******************************************************************
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!
++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
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!
********************************************************
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.
*******************************************************
Join us in REACHING FOR THE STARS on FACEBOOK!
www.firstgiving.com/xpscampsundown
Camp Sundown 2009
Camp Sessions at the Craryville facility will run July 6-10 and July 13-17. Contact us for an application to be mailed to you. Volunteers are needed as well. Please fill out and send application.
Additional sessions pending adequate funding. Stay tuned.
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
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!
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.)
*The Tenth Annual NY City Walk for XP on October 18 in Central Park was a huge success gathering about 300 people to raise awareness and funds for the XP Society. Congrats Bruce on a job well done! Thank you all volunteers, donors and walkers for all your efforts! *
Camp Sundown 2008 was held for six sessions this summer including a special session for the third year in a row just for teens and a special October Harvest Moon camp. 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.We were taught dance and scuba diving,CPR and first aid, cookie baking and pumpkin carving. We admired art and firetrucks. Thank you to our many donors, sponsors and volunteers for another perfect year! 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 the Second World Congress on XP in July 2009!
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!
******************************************
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 caren@xps.org 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, 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.
***********************************************
PODCAST with Dr. James Cleaver, UCSF
Click here for radio interview
***********************************************************
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 April 6, 2009