Camp Sundown for XP Families (Aired on AM on Sept. 27 & on FM on Sept. 29, 2013)

(Standing. L to r) Jonah Triebwasser, Sarah O’Connell  (Seated) Caren Mahar

(Standing. L to r) Jonah Triebwasser, Sarah O’Connell (Seated) Caren Mahar

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. Ms. Mahar describes Camp Sundown in Craryville, NY, the only camp of its kind worldwide, whose campers enjoy the thrill of camping life by sleeping during the day and starting their camp activities at dusk. Free to families, the camp can accommodate up to 200 people, including parents and siblings who attend with their camper child. Support comes from private citizens and groups such as the Patterson Rotary Club whose members volunteer and make donations. Ms. Maher says, “There is hope to make things work for your family.”

Learn More:
The XP Society
Xeroderma Pigmentosum (XP)

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September 27, 2013 · Posted in Health, Service Organizations