Camp Sundown for XP Families (Aired on AM on Sept. 27 & on FM on Sept. 29, 2013)
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The nonprofit XP Society provides families with support and information needed to help their children suffering from Xeroderma Pigmentosum (XP) or other life-threatening sun-sensitivity disorders. XP easily causes skin and eye cancers so families must be very careful about lighting. Caren Mahar, Executive Director and Co-founder with husband Dan of the Society, describes the special accommodations needed, including tinted windows and dimmed incandescent lighting, because even sunlight hitting a white wall can cause severe third-degree burns. Ms. Mahar, whose daughter suffers from this disease, explains how families struggle, under great hardship, to provide their children with normal lives: to go to school, travel, shop, and meet friends like themselves.