Orange County Communities Come Together To Help Raise Funds For Little Girl With Skin Disease

Main Category: Dermatology
Also Included In: Cancer / Oncology
Article Date: 08 Nov 2007 - 8:00 PDT

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The XP Family Support Group will be holding the 3k "Walk by the Light of the Moon" on November 10 in Ladera Ranch, Calif. to raise funds to help cure Xeroderma Pigmentosum (XP) disease. This devastating disease causes severe 3rd degree burns on the skin if exposed to sunlight, daylight or any ultraviolet light for even a moment.

One child that is living with XP is Riley Elizabeth, a beautiful 7-year-old girl in Orange County. Riley was born with XP and is one of only 150 people in the U.S. who is afflicted with this life threatening disease. While most children spend their days playing outdoors, splashing in the pool, and taking trips to the store with their parents, Riley must stay indoors with the curtains closed. She is not allowed to see the light of day or even experience just some of the everyday things that we take for granted - a walk outside during the daylight, recess and lunch outside with school friends, and trips to the park or pool before dark. Any exposure that Riley may have to U.V. light will eventually turn to cancer and may cause blindness.

XP sufferers are born with DNA that cannot repair cell damage that occurs from everyday exposure to ultraviolet radiation coming from sunlight, daylight (including shade), and fluorescent and halogen lighting. Even a few moments of exposure to daylight can cause severe 3rd degree burns that eventually become skin cancer. Patients with XP rarely live to adulthood because the DNA damage is cumulative and irreversible. Currently, there is no cure for XP, but doctors believe that a cure could be found in the near future if funds were available for research.

The goal for this year's Walk is to raise awareness and $200,000 for necessary research to help find a cure. The "Walk by the Light of the Moon" is being held at 7:00p.m. at Founder's Park in Ladera Ranch, CA. The Walk is held at night so that Riley can walk too and be safe. Registration, food, drinks and activities begin at 5:30p.m. All proceeds from the concessions will go to research to cure XP disease.

XP Family Support Group

The XP Family Support Group is a non-profit organization dedicated to raising funds to create awareness, further research and support families with children afflicted with XP. For more information on the "Walk by the Light of the Moon," registering to participate or XP disease, please visit http://www.xpfamilysupport.com.