The XLH Network Inc.
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.
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:
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:
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:
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:
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
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.
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
is available. Please read our full