1. How did you get involved with the XLH Network, and then how did you become a member of the Board of Directors?
I became a member of the XLH Network in 2000. I was having debilitating joint pain and looked to the internet for answers. Turns out my issues were not related to XLH, but finding the XLH Network was truly life changing. I'm a spontaneous case and grew up knowing very little about XLH. I recall late nights reading through the listserv archives in complete amazement. Having my issues, especially dental issues, validated through the experiences of other members was overwhelming, in that I was not alone and there was an explanation for my issues.
Shortly after finding the network I found a specialist and started the standard treatment of K-phos and calcitriol. Through the information from the network I realized I was not being monitored properly, and I was being over-dosed. The specialist who claimed to have experience treating XLH clearly did not, and I moved on.
Through the network I found out about and participated in several clinical trials at Yale, which is where I finally met another real live XLHer in the flesh. This only took 40-some years! Several meetings were organized at Yale with XLH patients and the XLH Network in order to generate more volunteers and involvement for the network. What came out of this was the first XLH Day in 2011. I was part of the planning committee for this event and every XLH Day after that. In 2012 I surmised sleep was over-rated and joined the board. I am currently serving a 2nd 3-year sentence, oh I mean term, and chair the Communications and Technology Committee.
2. What's your "super power" -- the special skill, knowledge or experience that you bring to the board?
I like to think everyone with XLH has superpowers, having that additional something to overcome the extra challenges thrown our way. Maybe my superpower is the ability to be involved in a lot of activities and still keep my head above water. Well, maybe it's being super crazy, or the inability to say no, which may be genetic. I'm one of nine children and my mother was always asked how she ended up with had nine kids, and her response was, "I guess I couldn't say no." See, genetic!
In any event, I'm an electrical engineer and have been working in the semiconductor business for 30 years. The job is quite demanding and ever changing but keeps me on my toes and pays the bills. My second "job" is the XLH Network. Giving back is important to me and the work I do for the network is a small price to pay for all the information that I have received. It is also a pleasure to work with the rest of board, as they are an outstanding group of unselfish, dedicated professionals.
Additionally, I'm a musician and songwriter and have been performing with my wife in a band for the last ten years. We have an original CD and perform pretty much anywhere small objects can't be hurled at us. (Shameless promotion is tempting here but I'll behave.)
I'm also an exercise enthusiast and make time to work out. I think this is the best Rx we can do for quality of life issues. So holding all this together along with the other routine aspects of life can be quite challenging. When all these things peak at the same time I do question my sanity and consider scaling back, but see above (inability to say no).
3. What XLH project are you working on now that you're particularly enthusiastic about?
As mentioned above I chair the Communications and Technology Committee. Personally, I update our websites, participate on the XLH Day committee, and help maintain our online sites. We are a virtual organization and everything we do is based on technology. As a committee we make sure our existing technology keeps working and meets our needs, and then look to see what's out there for improvement. Our communications are based on technology and this is also reviewed constantly to make sure we are reaching members in the best way possible and that we are providing a mechanism for member engagement.
Some exciting future projects are a new integrated website with a more value added member site. We also realize the listserv is very old technology that doesn't compete with today's social media experience, so we are looking at viable replacements. Without giving away too much we are also working on and investigating sites for various media.
Now, to get on my soapbox (because I like to feel tall once in a while), keeping this organization going is very difficult with volunteers, and growing it is even harder. Sustainability is the key, and in order to do that we need all members to be engaged, and everyone with XLH to be members. Our disease is rare, our population is small, no pun intended, and we need everyone's involvement to be successful. Imagine the network with paid staff, with representation at every major medical conference, funding research, influencing insurance coverage, and the list can go on and on. It won't happen on its own, and surely can happen faster with the support from all members.
Now can someone help me down off this box . . . .