I just learned that one of the three co-founders of The XLH Network, Joely Valentine, died last week. I can’t find an online obituary, but you can see the announcement at the Gofundme for her medical expenses.
According to notes given to me by an early president of the Network, Joan Reed, “Larry Winger of northern England develop[ed] a website to collect information on XLH [in the summer of 1996] …. He [was] soon joined by Colin Steeksma of Canada and Joely Valentine of the United States, and a listserv [was] formed with St. John’s University as the host. It was known as f-hypdrr (Familial HYPophosphatemic Vitamin D Resistant Rickets)…. [B]eta testing began November 29, 1996. By December 16, subscribers included patients from England, British Columbia, South Africa, Minnesota, and researchers in Manchester (England), Texas and Connecticut.”
When I first joined the listserv some fifteen years later, Joely was active there, sharing her experiences with others, many of whom had never known—either in person or virtually—anyone else with XLH, and some of whom felt overwhelmed by what they didn’t know (or the realization that what they thought they knew was wrong). I was one of those people, a spontaneous case who had never met another XLHer before then, and in fact didn’t know that the correct name for the condition was XLH instead of Vitamin D Resistant Rickets.
If not for the listserv, I wouldn’t have become an active participant in my own treatment, I wouldn’t have volunteered for the burosumab clinical trial (or any number of other XLH-related and non-XLH research projects), and I wouldn’t have joined the Network’s board (where I worked on things like the book, Weak Bones, Strong Wills, where Joely was acknowledged as one of the founders of the Network).
And of course, I wouldn’t be writing this blog/newsletter!
I only met Joely once in person, at the 2018 Symposium on Hypophosphatemia, but none of my work for the XLH community would have happened without Joely and others like her leading the way. Given Joely’s XLH-standard short stature, it seems a little ironic to say I stand on the shoulders of giants, but it’s true metaphorically, even if they just happen to be physically small.
I hope you’ll join me in gratitude for Joely’s pioneering work on behalf of XLH patients, caregivers, and their friends/families everywhere.