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Introducing the Board of Directors Excerpt of a Mar 21, 2005 email from XLH Network Inc. coordinator and XLH Network Inc. President Joan Reed announcing the formation of the first Board of Directors for the XLH Network Inc.: Hi everyone, What a weekend we just had in Syracuse, New York! Last summer we began contacting our membership to see who might be interested in helping us launch our effort to become recognized as a [USA] 501(c)(3) Not-For-Profit Corporation. Several of you responded and Joanne Joseph followed up with those who did. Elaine Jacobson and I began talking and planning this effort several years ago, and I mentioned last fall that due to some health problems Elaine is experiencing she's been unable to continue doing all the work she'd been doing in that regard, so we decided to incorporate in New York State with my home as the principal "office" rather than hers in Maryland. I also wrote that for sentiment I signed the Certificate of Incorporation on November 29, 2004....the 8th anniversary of the beginning of our F-HYPDRR listserv and thus considered the beginning of the XLH Network. We. . . . . were officially incorporated on March 2nd, 2005. On Friday, March 18, 9 people arrived in Syracuse from around the USA for our first "board and volunteers" meeting, and another arrived Saturday morning. . . . . Two opted not to be named directors (though I know they will be active volunteers), which leaves us with an even number of directors without any tie-breaking vote in cases of a split decision on any matter, but I think we can work through that. I thought I would introduce to you here our Board of Directors and the Officers of our new Corporation.
Each of the above came to Syracuse at their own expense, taking time from their busy schedules to be here and contributing an immense amount of effort to get us going on an expanded level so that we can do even more to reach physicians and the public to raise awareness of XLH and the related disorders which we also support. Our next step is to get the federal government's application for 501(c)(3) status out the door, which we'll be working on over the next week or so. . . . .I can't imagine we'll have difficult getting approved, in which case our USA tax exempt status will go back to the date of incorporation, March 2nd. We're not among the big nonprofits yet, but we're at least starting on that journey. Osteogenesis Imperfecta (so-called brittle-bone disease) has the same 1 in 20,000 prevalence as XLH, but they're a big organization now. There's no reason we can't be one day as well. I hope you find this news as exciting as we do. All the best,
Joan Reed Last modified Aug 8, 2007 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 spotaneous dental abscesses, and low blood phosphorus levels.
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