The XLH Network

As I mentioned just prior to the beginning of the New Year, I wanted to share some information about a charity that is very close to my heart. Well, the XLH Network is the charity closest to my heart. My paternal great-grandmother, paternal grandmother, father, daughter, and myself all suffer from the EXTREMELY rare disease. What is XLH? Well, XLH (X-Linked Hypophosphatemia) is a rare disease that affect about one invery 20,000 people. XLH is a genetic disorder that is passed from one generation ot the next, although a spontaneous mutation may occur in a family with no previous history. It is carried on the X chromosome; hence the "X-Linked" name. The rest of the name identifies the primary and sign of XLH, which is a low level of phosphorus in the blood; this is called hypophosphatemia. Another sign, which doesn't always occur or can be mild to severe when it does, is bone disease called rickets where the legs can become knock-kneed or bowed. The XLH Organization is a newly formed, public charity that is in dire needs of funds that will facilitate worldwide advocacy, education and research for XLH by providing resources and support for affected families and health care providers. The size of your donation is NOT important, but the importance of your support can NOT be stressed enough. Every single dollar, quarter, dime, nickel and penny will advacne the organization's cause to raise awareness about genetic rickets. I hop you will find it in your heart to contribute. Your assistance will make an impact on XLH research, awareness, education, treatment options - and some day, hopefully a cure. Please join in the cause. For more information, please visit: http://www.xlhnetwork.org. Checks should be made payable to: The XLH Network, Inc. and sent to: 4562 Stoneledge Lane Manlius, NY 13104. THANK YOU FOR YOUR TIME AND YOUR ANTICIPATED SUPPORT!!!!