When Caren and Dan Mahar of New York learned their daughter Katie had been afflicted with xeroderma pigmentosum, they didn't know where to turn. Individuals with XP must avoid the sun and bright lights because their bodies do not have the ability to repair skin exposed to ultraviolet rays, so what would be normal exposure to sunlight for anyone else can be catastrophic for a person with XP.
The odds of an XP patient getting cancer are great if exposed to ultraviolet light. They must therefore adjust their lifestyle to this condition by staying indoors during daylight hours. While indoors, special window shades and low-wattage lights are necessary for XP sufferers. At least 150 people in the United States and 3,000 people worldwide are afflicted with this disease. There is no known cure.
In 1995, the Mahars founded the XP Society to help patients and families dealing with the disease. The society supports medical research for finding a cure as well as providing information to XP patients. The biggest single act of the XP Society is its Camp Sundown, where patients and their families gather twice a year. The hours of the camp are structured so all activities take place at night when it is safe for XP patients to be outside. Without a dime of federal funding, the XP Society has waged a sustained, organized campaign of information and support for XP sufferers. The society recently received a $10,000 donation from Brad and Kimberly Williams-Paisley.
Caren Mahar, director of the XP Society, took a moment to answer some questions about ongoing research for a cure for XP and the challenges of fund raising.
Can you talk about some of the ongoing research for finding a cure for XP? What is the funding status of these research projects?
There are many different types of studies going on right now that may help cure XP in the not-too-distant future. From ultraviolet light studies on cells of XP and control, we are able to tell how fast cells die when exposed to UV radiation. This type of study also helps determine the type of XP (XPA, XPB, XPC, etc.) a patient has.
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