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Xeroderma Pigmentosum is a rare genetic condition whereby a person's DNA lacks the ability to repair damage from ultravioet light.  The disorder leads to skin cancer as early as childhood.  Unless sun exposure is minimized, XP victims are likely to die of malignant melanoma or squamous cell carcinoma.

Support XP:

  • Help kids in Guatemala
  • Sponsor a child to go on an XPFSG retreat
  • Raise money and hope for a cure!

Helping families dealing with XP,
from diagnosis through all stages of life

WELCOME!
The XP Family Support Group is dedicated to improving the quality of life of those affected with xeroderma pigmentosum through education and support services, researching effective treatments, and ultimately finding a cure.

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Current Events


Welcome to the XP Family Support Group site. Here is what's happening:
 


'Hidden From Light' Documentary Screening

In a pre-release screening, the producers of "Hidden From Light" announce the film will be presented along with the cast and crew at the New Children's Museum in San Diego on Friday, October 16 at 7:00 PM.  All the doctors involved in the film will be there, and all proceeds go to helping children with XP.  Click Here for more information.

Camps and Retreats 2009

It's that time of year when we start to think about what to do when the kids aren't in school.  It's a particularly tricky thing to fill a Spring break or long Summer with typical camps.  Not only are most of the activities designed to keep everyone outside, but the task of working with the scores of camp counselors who will be unfamiliar with the requirements of an XP kid is daunting.  

Fortunately, there are some wonderful opportunities designed specifically to meet our needs!  Follow the links to the right to find out more about camps and retreats in 2009.  And check back often as we will update the list as we find more.

Crop for a Cure in Sacramento

Calling all scrapbookers in Sacramento this summer: come join us for a great day of cropping on August 1, 2009.  From 10 AM to 10 PM, there will be plenty of room to spread out and do pages and pages.  There will be vendors there and in addition to getting lunch and dinner, you will have FUN - and a chance at prizes!

For more information, click here.

Raffle Winners


Richard Bricker (left) of Eaton, OH, hands over the keys of a 2009 Harley-Davidson Fat Boy motorcycle to raffle winner Nick Kuryluk of Mississauga, Ontario, Canada.
EATON, OH, June 8, 2009—Nine year old Cameron Bricker of Eaton, OH, suffers from the rare disease Xeroderma Pigmentosum (XP) which leaves her body unable to protect itself from the sun’s deadly UV rays.  After attending a retreat for XP patients and their families in Sacramento last year, Cameron’s parents Richard and Sherry wanted to raise money for the group that provided a wonderful experience for their family. Determined to make a difference, the Brickers organized a raffle with the grand prize of a Harley-Davidson Fat Boy motorcycle and raised more than $18,000 for the XP Family Support Group.



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