The structure of The XLH Network Inc. today reflects its origins in the Internet. The coordinators play a variety of overlapping roles. Managing and advising the newly emerging Nonprofit Organization in the USA is one of them.

	Larry Winger's daughter and son have XLH, which they inherited from their mother. In an attempt to understand the syndrome he set up a web site devoted to this inherited rickets condition. When enquiries started reaching him, he co-founded the F-HYPDRR mailing list with another parent of an affected child. Larry has a Ph.D. in immunology, and a PGCE in secondary school science. Larry is very involved in his community and with his family, but still performs some coordinating roles in the F-HYPDRR mailing list. Larry can be reached by e-mail at: larry.Winger@XLHNetwork.org
	Joan Reed inherited XLH and has raised her 3 boys who also have the condition. She has been an active coordinator in the F-HYPDRR mailing list, and has taken on the enormous role of incorporating the XLH Network as a non-profit organization. Joan was recently appointed President of The XLH Network Inc., and presides over the newly formed Board of Directors. Joan can be reached by email at: Joan@XLHNetwork.org
	Colin Steeksma has a son with XLH, and been a coordinator of the F-HYPDRR mailing list from its inception. Initially working closely with Larry, then later with Elaine and Joan as coordinators for the F-HYPDRR mailing list, Colin has done some work maintaining The XLH Network Inc. web site and is "back-up" for the role of webmaster. He has also developed associated web sites, in particular an exhaustive FAQ (Frequently Asked Questions) of inestimable benefit to members of the XLH Network. Currently Colin's main function is as "Subscription Manager" for the F-HYPDRR mailing list. Colin can be reached by email at: Colin.Steeksma@XLHNetwork.org
	Jim Walker inherited XLH from his mother. He joined the XLH Network in January of 1998, looking for a connection between neurological problems and XLH. He finally found the connection here in 2004. He considers himself a self-taught programmer, programming for fun or money ever since the mid 80's and then on Internet projects since the mid 90's. He belongs to a local programming club and so is completely immersed in the world of computers and the Internet. In August 2005, Jim graciously took over as the Webmaster for the XLH Network Inc. Since then he constantly comes up with cutting edge and innovative changes to the workings of the website interfacing with the F-HYPDRR Mailing List. Jim can be reached by email at: Jim.Walker@XLHNetwork.org
	Elaine Jacobson (Coordinator Emeritus) has been a coordinator of the F-HYPDRR mailing list since November 1997. Elaine inherited XLH from her mother who was not aware that she had the condition, since her bones were not affected. Elaine has a Ph.D. in Mathematics, and is a member of the American Society for Bone and Mineral Research (ASBMR). She is currently on hiatus from her duties at the XLH Network Inc.
	Scott Schmitz (Webmaster Emeritus) set up this formal web site for The XLH Network Inc. Scott has an MBA from George Washington University and is a member of Beta Gamma Sigma and is a certified Project Management professional (PMP).

Last modified Mar 27, 2011

XLH is also known as X-Linked Hypophosphatemia (sometimes also spelled as hypophosphataemia), X-Linked Hypophosphatemic Rickets, Familial Hypophosphatemia, Vitamin D-Resistant Rickets (VDRR) Rickets and even Genetic Rickets. Its notable characteristics are bowed legs, short stature, poor teeth formation causing spontaneous dental abscesses, and low blood phosphorus levels.

© 2002-2011, The XLH Network Inc.
The authors of this web site are not medical professionals, and this information does not substitute for medical care. Information on these pages is based on biomedical research, published in peer-reviewed journals, and international research conferences. Additionally, in some cases anecdotal information is provided by subscribers of the F-HYPDRR group, a mailing list for The XLH Network Inc. A complete web-site bibliography is available. Please read our full disclaimer.