Wednesday, July 16, 2014

Mid-year report

The first half of 2014 has kept Board members hopping. Our president, Becky Mock, has been traveling far (Chicago for the ICE/Endo conference in June), and near (her home state of North Carolina for ISPE-CaSA in April), and assorted places in between (mostly the D.C. area for Rare Disease Day in February and the World Orphan Drug Congress event in late April). She's spreading the word about XLH to medical practitioners, while also learning from other patient support groups for rare diseases.

The treasurer, Geoff Edelson, has been reviewing our expenses and writing checks. All of the travel doesn't come cheap, even though we do our best to get grants and scholarships or cut deals to reduce the costs, to stay within our tiny budget. He works hard to keep us on track.

Our vice-president, Bill Coogan, has been researching business/financial issues for us and lending a helping hand on assorted committees. He and Kathy Buchanan were instrumental in getting our somewhat dated By-Laws reviewed by a lawyer with special expertise in non-profit organizations, and then using the recommendations to make some much-needed changes. It's not exactly exciting stuff, unless you're a lawyer (and even then, I can attest, it's not that exciting), but it's got to be done, and it takes time, energy and money.

Joyce Inman is our faithful secretary, transcribing the meeting minutes and helping to establish policies and procedures for our growing organization. She's also been active on our fundraising committee (more information on that in the coming months), and you may recall that she's written an essay for this blog. (She also found time to answer the standard interview questions, which you'll be able to read in a couple weeks, to get a better idea of how amazing it is that she finds the time to volunteer on top of all her other commitments.)

Chris Younger and Oliver Gardiner are the Board members with the most advanced tech skills, so while they've been busy on the Network's behalf, a lot of it is invisible. They, along with our webmaster Jim Walker, make sure that the website is there when you tell your doctor about the medical citations listed there, and your doctor goes to look them up. Chris also makes sure that the new clinical trials and studies get listed at the website, and helps the Communications Committee to prioritize the million and one things we need to consider. Oliver's working on a Secret Project, which I'm really excited about, but we're not ready to unveil it quite yet, because we want it to be just right first. Trust me, though: it's going to be great, and it's required a lot of thought and skill on Oliver's part.

Oh, yeah, and then there's me, your Social Media Coordinator for the Board, Gin Jones. I've been busy writing blog and facebook posts to keep you updated, editing posts submitted by members about their experiences with XLH, and searching the internet for the latest news of interest to XLHers.

I'm going to save the Scientific Advisory Board's review for another post, or this will be too long. (But I have to mention the Growing Up With XLH video, which you can view here, courtesy of SAB chair Carolyn Macica, PhD., Quinnipiac University, and SAB member Thomas Carpenter, MD.)

The second half of 2014 looks to be just as busy. The Board is having a retreat to do some much-needed Strategic Planning in a few weeks (watch Facebook for pictures of our haggard selves as we work ourselves to the bone, and make sure to like our page so you'll keep getting our posts in  your timeline), and then there's the American Society for Bone Mineral Research (ASBMR) conference in September, the unveiling of Oliver's Secret Project, and possibly some other projects coming to fruition. We'll also be keeping an eye and ear out for the results of Ultragenyx's Burden of Illness study, and the pediatric KRN23 trials, so we can report back to our members as soon as information is available.

We know there's even more we could be doing. We're looking into more places where we can interact with doctors and dentists, and more ways to interact with XLH patients and their caretakers to get you the best and most up-to-date information. We have to be realistic too, keeping in mind our financial and human resource limitations, but we'd love to hear what else you think we should be working on. You can send me your suggestions: GinJones at

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