For most that get married, having children is both desirable and inevitable. And at some point, the health of your future children will come to mind. For this reason, Novell would like to make our weblog visitors aware of a rare genetic disorder - Xeroderma Pigmentosum - that affects hundreds of American children and thousands worldwide. I have featured this issue in our Novell News section on our corporate website - www.novelldesignstudio.com. This story first appeared on a wedding planning blog - WeddingPlanningandAccessories.com (to which I contribute).
Please help create awareness for children with Xeroderma Pigmentosum.
Okay. So the wedding is over, and your life is getting into full swing. And for most brides and grooms, eventually the idea of children comes into the picture. While we all hope and pray that everyone's children will be born happy, healthy and live a long and normal life, unfortunately many will not. With this in mind, a very rare condition affecting hundreds of children in America, and thousands worldwide, recently got my attention.
Yesterday, Yankee manager Joe Girardi was a guest on WFAN's Mike Francesa sports radio program. Joe was speaking very passionately about Xeroderma Pigmentosum, an unusual genetic disorder that does not allow the skin to properly repair itself from exposure to UV light sources. Children afflicted with Xeroderma Pigmentosum - or XP - must avoid sunlight all together. A lot of their time is spent indoors and out of sunlight's way, but they can venture outside at night after the sun is down. And on July 24th, the Yankees hosted children with Xeroderma Pigmentosum at a night game against the Oakland A's to help raise awareness of this incurable condition (the Yankees won 6-3 - by the way).
A summer camp created to host children with Xeroderma Pigmentosum from all over the world has existed since 1996. The Camp Sundown Retreat House in Craryville, New York, offers a unique night camp program which gathers families and scientists from around the globe to share support, recreation, information and friendship under the safety of the stars. However, due to a lack of funds, the camp had to be shortened from its normal length of eight weeks to just two this year. Therefore, families with a child afflicted with Xeroderma Pigmentosum will unfortunately be lacking the complete Camp Sundown experience.
Read the rest of "Please help create awareness for children with Xeroderma Pigmentosum" at WeddingPlanningandAccessories.com.
