“Children of the Night” Have A Blast At This Year’s Camp Sundown
Campbell Hall – What Could be better for some kids whose lives have a lot of restrictions due to skin sensitivities? How about a summer camp with hot shot motorcycle theme?
Camp Sundown began in 1995 as one family’s dream to give their daughter a “normal” childhood camp experience. It has grown into an annual gathering of XP kids, a foundation for their families and leading researchers to share experiences, build friendships and learn from each other. A camp for the “Children of the Night.” This year the excitement was ramped up with visits from some hot Orange County Choppers who brought some really rad bikes!
The local camp session, organized by Joe Volkmer, Luanne Meade, and Michael Snyder, along with many other firefighters and firehouse members from the Otterkill Engine Company, welcomes campers for a short weekend of fun. Original camp founders Dan and Caren Mahar’s youngest daughter Katie was diagnosed with XP in the 1990s.
XP is a rare disease that exhibits extreme light sensitivity and puts patients at great risk for hundreds of skin and eye cancers.
News stories have helped to educate about XP. People affected by extreme sun sensitivity look just like everyone else, until blisters or freckles, cancers begin to appear. Parents don’t know why their baby cries when they go outside. Children don’t understand why the sun burns so painfully. We hope through more stories like these and work through the Xp Society, there will be a greater understanding and awareness about XP, more research study, and more ways to fill these kids’ lives with joy.
The Xeroderma Pigmentosum Society also runs a number of programs including education, fundraising, and outreach to benefit those affected by XP around the world. This non-profit foundation has no paid staff positions, benefiting from the generosity of volunteers and donors.
To learn more about XP and some of the many programs offered by the Xeroderma Pigmentosa Society, go to https://www.xps.org.
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